Next steps are really hard

I did a really hard thing.

A thing that has been hanging onto my mind for weeks.

The thing I’ve been dreading ever since we found out that Baby #2 is a boy.

I cleaned out and packed up Sophie’s things.

She was never at our current home. We moved shortly after she relapsed. We wanted to be closer to our local hospital, to our support system, and we wanted a new clean environment for her to come home to.

But she never came home.

Most of her things were already in bins in the closet but, clothes were in the dresser and the whole closet was hers…but little brother is coming. And I’ll confess to feeling immense loss at that. Don’t get me wrong, I’m SO EXCITED to meet my son. I already love him and want him here. But I’m also mourning being a girl mom. I’m so sad that there won’t be any bows or tea parties. I probably won’t be watching Sofia the First or Tinkerbell. My favorite baby girl outfits won’t be getting reworn. And I’m sad. So freaking sad.

So, this week, I got It all out and packed it up. I touched it all. Every piece of clothing. Every blanket and towel. Every bib and burp cloth. Everything she once wore or touched. I cried and smiled and admittedly really wished I could’ve had a glass of wine while I was doing it. But I got it done.

I was even able to pull a few gender neutral outfits out that brother can wear and some towels and blankets that he can snuggle in. I got out the bottles and nursing accessories. And I packed the rest up for my parents’ attic…praying that one day, we’ll be blessed with another girl that will use them.

The best part though, is what didn’t get packed up. We decided that some things are just too special for storage. Too important to be packed away. And those things now have a very cherished place. We got a storage ottoman for our room…and I set aside things for that place. So now, she has a place in our room with us. And that makes my heart happy.

I can’t say that doing this made me feel ‘better’…it sucked. Every second of it just plain sucked. I should be setting up her own ‘big girl’ room AND baby brother’s room-not packing her stuff away. But I do feel a sense of a weight lifted off. This big thing on my to do list that I don’t have to stress about anymore. Now, I feel better about preparing for Connor…because Sophie’s things have been cared for and placed in a special place.

#SophietheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #childhoodcancerawareness #cancermom #childloss #lossmom #rainbowbabybrother #ConnorJackson #BigSisterSoph #livingwithgrief

2nd Annual Sophie The Brave Day

I’ve been reflecting on Sophie’s birthday for the last week and it was such a sweet day. A day that carried a lot of anxiety but also so much happiness.

We visited the hospital and it was so special. I reached our to friends and family on my personal page about wanting to shop for the Child Life department and they showed up in an amazing way! Over $800 was donated to go towards this shopping!

We were able to get a HUGE haul of activity packs, books, and supplies for the prize closets. We got 4 nurse goodie baskets for each of the Oncology units. We were even able to get extension cords and phone batteries for parents as well as laundry pods for Ronald McDonald House.

And we delivered it all!

I love this hospital. I love walking where she walked and seeing the places she loved. I love the people there. They know us in a way that no one else ever will. They knew and loved our girl. They cared for her in her weakest and us in ours. For me, being there feels like going home and the people there feel like family.

It was a sweet day in spite of the sad.

Beauty from ashes.

And next year, little brother will get to visit too.

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.

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.