To anyone that feels like it’s not worth it to go on…

Let me start this post by saying, I am not suicidal…I have never been suicidal. I do, however, know what is feels like to want to die. Which is entirely different.

Holding my child after she was gone…I wanted to go too….to have a nurse pump me full or morphine and just drift away with her. Seeing her in a casket…I wanted to be in it with her…holding her forever. Going to her grave…I’ve wanted to be in Heaven with her….to just die right there and dissolve into the ground.

I get it.

Trust me I get what it’s like to not know how to keep living your life and to just want it all to be over. The brokenness of this world and the people in it. I get what it feels like to be on your couch for days on end and even the smallest tasks like answering your phone or getting food feel like exhausting work.

Death. Pain. Illness. Grief. Loss. Suffering. Unfairness. Evil. Greed. Hate. Rage.

If you let them, they’ll all take over your brain and your heart. You want it to end and to be somewhere that those things don’t exist.

I’ve seen it manifest in my personal life through family. A great aunt who lost a daughter at 2weeks old and couldn’t recover from it so she decided to end it. A great uncle who couldn’t cope with all the brokenness and strain this world offered so he left it all behind. A kind hearted man who couldn’t face more chemo for the cancer eating his body away so he took it into his own hands. Each with their own struggle that I can’t and won’t judge…they did what they did and it’s between them and the Lord.

Even closer I’ve walked with a sister that has struggled with mental health for most of her life and who constantly is aware of her depression and suicidal tendencies. Her hormones tell her she’s crazy and inadequate. Her brain and memory fail her constantly. She feels things in a big way and they overtake her often.

But she keeps swimming.

We all keep swimming.

We long to be away from this world where all the bad seems to rule. Leaving it on our own terms seems to be so much easier.

You see, for me, that’s not the answer, friends.

For me, its medication that helps slow things down. It’s counseling to express my grief and pain in a safe space with someone I trust that will tell me hard things but who also will protect me if she sees me going down a destructive path. It’s a marriage where we are honest with each other about how we feel and what we need…even when it’s hard. It’s exercise and yoga to get my blood pumping and productivity flowing. It’s outlets like doodling, writing, reading, and whatever feels fun instead of oppressive. It’s choosing to work in an environment that is flexible even if it’s less money because it’s good for me right now. It’s a bible study group that I can be open with on good and bad days. It’s a Life Group that constantly lifts us, loves us, and supports us. It’s a church family that truly is family. It’s friendships that are honest and real. It’s prayer-lots and lots of prayer for help and grace and wisdom.

Does my approach to my personal grief and mental health apply to everyone?

Is the the best answer?

Am I the greatest of all?

Absolutely not.

I’m simply saying that, if you’re in that place where it feels like ending your life is your only option…it doesn’t have to be.

You have people that love you.

You have a BIG GOD that loves you in BIG WAYS if you’d open yourself to Him.

National Suicide Prevention Lifeline

1-800-273-8255

**Disclaimer-these are my opinions, only and my personal experiences and beliefs. I would never presume to judge others for how they deal with the pain in their lives. We all live uniquely on this planet the best way we can. And those who have felt no other way out than suicide…that decision was a result of brokenness and mental Illness and it’s between them and God. My prayer is that the Lord would fill hearts that see a need to end their lives and that He would change things for them and show them ending it isn’t the only option And that He’ll come soon and heal us all!

#SophieTheBrave #DomoreforSoph #GodisBigger #OneDayCloser #childhoodcancerawareness #cancermom #lymphomasucks #childloss #lossmom #grief #suicideprevention #mentalhealth #1in4

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.

Grace upon grace

It’s been quiet over here lately because I’ve just been a little blah. Staying busy has been really good for me over the last couple of weeks but I just haven’t had much to say in the writing department.

That’s not true, I have a lot to say but, I just haven’t been able to articulate a lot of it.

Grief and stress have changed so much about me. They’ve made me a bit more distracted and ‘scatterbrained’. I’ve always been the person that tackled my to do list everyday and found immense pleasure in marking things off. Now, I seem to keep adding to my list and I’ll tackle something then get distracted and start something else. And while I absolutely love the flexibility of my part time work, it’s been hard for me to figure out structuring my own schedule. I’ve never had to do that before. I’ve been on student then teacher schedule pretty much my whole life. So now, when I can’t seem to get things done I get frustrated and overwhelmed at my inability to finish projects that are on my heart and I end up being even more unproductive. And the list of topics and articles I want to write just keeps growing.

It’s like grief-induced Attention Deficit Disorder…Or that’s my self diagnosis.

But that’s where grace has come in such a big way. We’ve felt such profound grace since Sophie got sick and it carried us through her entire cancer battle. Then that grace multiplied to a level I’ve never experienced before in the last 13 days of her life. And getting through her death, the weeks after, and now almost one year of being without her….would just not have been or continue to be possible without it.

If you were fortunate enough to be in our hospital room during the last days or at Sophie’s service then you know what I’m talking about. It was just this physical feeling of a warm hug the second you stepped in. I wish I could bottle it and give it to those that need it.

But what’s so great about my God is that I don’t have to bottle it and give it to anyone. He offers it freely to anyone that needs it. Even if you don’t believe in Him…He’s still offering you grace…and you don’t have to do anything to earn it.

That’s a whole different conversation but, my point is…grace is what keeps me going. It’s not me that’s strong. It’s not me that makes up the words I write. It’s not me that has the strength to walk the halls of the hospital or comfort another grieving mom. It’s not me.

It’s Jesus and the grace that He pours into me and allows me to get through each day. It’s tangible and real in my life and when I have nothing to say or can’t seem to articulate the jigsaw puzzle that is my brain some days…I just ask for grace. Does that mean there aren’t days where i wake up swollen faced from crying into her stuffed giraffe that I sleep with? Or that I don’t feel crushed under the weight of her absence at some point every single day? No. But it does mean that I’m able to survive it. I’m able to have those moments…for as long as they last and then Grace picks me back up and helps me move through what’s next.

It’s not profound. It’s not some theological masterpiece of a prayer. It’s just grace.

“For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God—not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do” -Ephesians 2: 8-10

#Sophiethebrave #DomoreforSoph #Godisbigger #Onedaycloser

Sophie The Brave indeed

Courage is defined as strength in the face of pain or grief so it’s entirely appropriate that Beads of Courage are given to children going through medical suffering.

In children’s hospitals across the nation, children get a bead for each different test, surgery, scan, procedure, medication, or hardship they face during their treatments. There are programs for Childhood Cancer and blood disorders, NICU, cardiac conditions, and chronic diseases.

When a child is older, the incredible Child Life Specialists are able to use these beads to explain what is happening to them. They bring their name letters in and let the child start their necklace. It’s an incredible way for kids to have a visual and tactile way to process what is happening to them.

20374563_735665063285518_1640961366467434664_n

For younger children, like Sophie, it’s a way for moms, like me, to keep track of what is happening. I am by nature an organized person so these beads were so therapeutic to me. Everyday I wrote down what Sophie went through, charter each thing in her head journal, and then requested the beads from our nurses every 21 days when the journal was full. Then I’d sit-usually late at night while my baby slept-and I spread out her ever growing necklace. I’d dump out the bag of 3 weeks worth of beads and start sorting. I put each color bead in its own pile and then made patterns. Yellow, black, white, rainbow, blue, bumpy…repeat. Green, pink, red, star…repeat. And on and on I’d go until I ran out of beads. Then I’d tie the necklace back together, walk over to Sophie’s bed, and hang it up on her IV pole….A few feet longer than it had been the day before.

I did it every 3 weeks for 7 and a half months. It helped me process what was happening. It told her story. I wanted every single thing she went through documented. It was her testimony. The physical proof of how brave and incredible she was being. I also wanted it to be able to show her one day when she was big enough to understand. These beads were so much more than a necklace.

22048131_10154899403056981_2280991038751715563_o

In December when we found out Sophie was terminal and we discontinued treatment, I almost stopped keeping track of her beads. I thought, what’s the point? She was dying. I would never be able to show her the beads. I’d never get to sit and tell her what each one meant and how she had overcome all of it. I’d never get the victory picture of her healed and whole, covered in thousands of beads. What was the point?

My mama, Sophie’s Mammy, helped me see that there was still a point. We didn’t know how long she had left but, however long it was…she still was earning those beads. She was still going through one of the hardest things a child could ever go through. Her story still deserved to documented. She knew I’d want that story-the complete story. She knew ‘what’s the point’ was my crushing grief talking.

So for 13 more days, I kept writing down each bead and giving the journals to our nurses. One precious nurse brought them in one night with ‘God is Bigger’ beads for me to add to her necklace.

And on that final day, January 4, 2018, Child life searched the entire hospital for one bead. The last bead. The butterfly.

 

Sophie was sick for 232 days. She has 1,344 beads. Her necklace weighs 3.5 pounds and is 45 feet long when stretched out. She had:

10-heart shaped-PICU

200-yellow-nights spent inpatient

26-red-blood or platelet infusions

116-Black-pokes with needles

181-white-chemo doses

137-rainbow-PT, OT, Respiratory, Speech

21-Acts of Courage

130-bumpy-days spent unable to walk…stuck in her bed

56-light green-X-ray, CT, PET, MRI, ultrasound

81-lime green-days with fever or neutropenia (no immune system)

28-Tortoise-spinal Tap or wound care visit

10-beige-Bone marrow aspiration

3-Orange-PICC placement & removal & port placement

13-magenta-ER visit or ambulance ride

76-purple-antibiotic infusions

35-times under anesthesia

20-aqua-tube placements (NG, G-Tube, Chest Tube, Foley Catheter)

52- grey-dressing changes

5-smiley face-hair loss/growth

5-Star-surgical procedures

125-light blue-mouth care

6-blue-clinic visits

3 fish- an upstream battle

1 Butterfly- flying free

And she earned every…single…one.

42745644_982443548607667_917027181857603584_n

Sophie’s beads tell her story. They tell of her bravery. They tell the excruciating journey or childhood cancer. And while I can’t ever sit with her and tell her about it…I CAN tell the world. I can tell anyone that will listen because, it’s her story, and it matters more than almost anything else in my life.

My Brave baby, I’m so proud to be your mama.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #BeadsofCourage #ChildhoodCancerAwareness #MoreThan4 #GoGold

The world doesn’t care that I’m grieving.

I’ve learned something in the last few days on our trip to Seattle for my sister’s wedding…the world doesn’t care that I’m grieving. My world felt like it stopped on January 4, 2018 when Sophie took her last breath but, it didn’t. Everything else outside of our little corner room on D6 at Children’s Health kept going. The clocks kept ticking, the hospital kept buzzing with activity, traffic still backed up, the sun still set, I kept breathing…and a whole host of other things kept going even though my body was stuck at 2:11 PM.

In the months following her death, I didn’t put myself into situations where i was around strangers much. I stayed in a bubble of people that know and care about me and Sophie. The world still moved on but, my people kept the bulk of change from slapping me in the face. Now, a few more months later, I’ve obviously re-entered the world a bit and am reminded daily that the world doesn’t care that my daughter died. My people care…but now that I’ve ventured outside of my comfort bubble of loved ones…the world is still big, it’s still turning, and it didn’t stop in January.

That became painfully obvious during our travels this week.

Grief does weird things to your brain. I now have, what I call ‘grief induced social anxiety’…I’m not a doctor but, I never had social anxiety or got overwhelmed easily before Sophie got sick. It now hits both Jonathan and myself pretty heavily sometimes…not all the time but, when it hits it’s pretty debilitating. Even with Zoloft on board.

In stressful situations, I get really overwhelmed all of a sudden, my heart pounds, I get really hot, tears tend to start leaking from my eyeballs and it leads to a full on sobfest.

And the world could care less.

On Friday, traffic didn’t care that we had a flight to catch for my sister’s wedding in Seattle. The 6 wrecks we passed had no clue that it had already been a hard week for me and neither did the construction crews that stopped us for almost an hour. The traffic in Seattle and the ferry schedules didn’t care that I was 200% overwhelmed by the time we got in our rent car at 7pm

Seattle time. None of it cared that I was on the verge of a full on panic meltdown. The rain and wet roads didn’t care that I was in tears because I was missing my sister’s rehearsal dinner on top of everything else. The world doesn’t care that I get anxious being away from home because I’m away from the cemetery…away from my girl. Then on our way home, yesterday, Hurricane Michael didn’t care that I was so ready to be away from large crowds and in my home on the couch under blankets. Airport delays didn’t care that the emotional hangover was setting in and I just needed to decompress at home for a bit.

Grief multiplies stress.

Stress multiplies exhaustion.

Exhaustion multiplies grief…..and on it goes, until it passes.

And the world doesn’t care but, Jesus does.

He knows the anxiety.

He knows the stress.

He knows the overwhelmed sense of panic.

He knows the tears.

He knows the grief behind it all.

He knows your heart.

He knows you.

He is the Shepherd that leaves the 99 sheep to find the one that’s lost.

And you know what? It’s already redeemed. Because we decided that driving home from Dallas at 1AM wasn’t safe so we got a hotel. Now, today, after 10 hours of sleep…we are going to visit the hospital and our sweet friend Addie. So yeah, Friday and yesterday’s travels were awful. But we had precious time with my family. My sister married her person in a gorgeous ceremony and we got to take in some incredible scenery.

We are thankful to be safely back in Texas. We are thankful to get to love on our nurses and friends.

So I’m calling that a win.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #AddiesArmy #WorldMentalHealthDay #1in5