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.

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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

H.O.P.E.

I don’t know the date most of the time these days. Each day just comes and goes like the day before. I try to stay so busy that I don’t have time to think. Today, though, it’s impossible to not know the date. Tomorrow is Valentine’s Day. The day that we show the ones we love most that we care. Now, Jonathan and I have never really done the big Valentine’s Day thing. We have never needed a certain day to show that we care-we usually just use it as a much needed date night at our favorite place, Mario’s. Tomorrow, we will still go on our date but, there won’t be a little brown eyed girl to go home to. I won’t have my favorite little Valentine to kiss and cuddle. It’s just one more reminder of what we don’t have anymore. Her absence is felt everyday but, certain days and things bring it up more.

We are just sad. There’s not really a redemptive way to sugar coat it. She’s gone and we feel the hole she’s left behind. Some days are worse than others but, we miss her. It’s that simple, and yet so very complicated.

I’ve been staying super busy trying to cope.

There’s been lunches with friends and I’ve started working out with a trainer. I’m in a women’s Bible study group that I’m truly enjoying. It’s a deep study about the life of Jesus that makes my brain tired but, my heart full. I also was given the most amazing devotional and several grief books that are all very helpful. I’ve been writing a ton that’s been incredibly therapeutic for me. I’ve even submitted a few of my articles to paid blog sites and will hopefully be getting to share those soon! I’m also continuing to pursue working on a possible speaking ministry. At the same time that keeping busy is good, it also can be too much. I’ve had a couple of days where I’ve been just tired. Tired of having to stay busy, tired of holding it together, and mainly tired of being without my baby. So there’s pros and cons to everything. Staying busy makes you tired but, doing nothing makes you sit around and cry. I think there’s a healthy balance to be found but, that looks different every single day.

Someone once told me that their heart was so broken but also so full. That’s how I feel, full of the promise of what’s to come but, broken by the world taking my sweet girl.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

In all of these things though, I still find hope. And right now hope looks like H.O.P.E-Helping Other People Everyday

Jesus calls us to be servants to others, to put ourselves last no matter what. We are to make use of our time and money for the good of others and for the good of the kingdom. That can look like all kinds of things. Personally, I’ve found lately that helping my sweet cancer mom friends brings me so much peace. If that means bringing food, babysitting a child while they’re in the hospital, sending them a devotional, or just sending a text that says ‘I love you and I prayed for you today.’ None of those things are huge but, they speak volumes to my friends.

I’m still trying to think of ways to DO MORE and I think I have a pretty good idea of a few things that we can do starting with taking toys to the hospital on Sophie’s birthday in March. I’m hoping that the Lord will show us where to go after that. We want to be used to help the many kids and families affected by cancer. Doing nothing is not an option now that we know just how big the world is.

Here’s a list of a few ways that people are doing more that have been shared with me:

-joining the bone marrow registry Be The Match

-give blood

-cancer survivors becoming volunteer patient liaisons for people currently battling cancer

-sponsoring a child through an organization. We currently sponsor a child from Compassion International. I know there are a ton of great organizations out there but, we have personal experience with Compassion and know it’s a legit and wonderful way to give back.

-Children’s Hospitals need volunteers in all kinds of areas. Contact your local hospital to find out what you can do.

-pay for someone’s meal or coffee

-Take a meal or an encouraging gift to a family that’s suffering or just to a tired mom

-volunteer somewhere-anywhere that needs it! Homeless shelters, nursing homes, at your church, etc.

-give financially to childhood cancer research. Gold Network of East Texas, Alex’s Lemonaide Stand, and St. Baldrick’s are all great organizations determined to fund research for BETTER TREATMENT FOR OUR KIDS

The list could go on an on…..I’m open to suggestions too!

These things are all small and simple but, if enough people are determined to do more, then the impact becomes huge.

H.O.P.E. doesn’t just bring hope to the people you are serving. It speaks hope and life into your life. We are closest to God when we serve His people. Luke 6:38 says “give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”

We still could use as many prayers as possible to get through each day without her. We still are struggling with what’s next and how to cope with this grief. Thank you to every prayer, card, donations, meal, and message that we’ve received. You have no idea how loved we feel by those around us and how humbled we are by Sophie’s impact.

Please also keep praying for our sweet friends. Addie, Jase, Abigail, Audri, and Kaylynn. 💜🎗

Keep her hope alive by sharing H.O.P.E.

Helping Other People Everyday

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.

Who we are.

We arrived safely last night in San Francisco and this morning we enjoyed an incredible morning of worship at Hillsong San Francisco.

We were reminded that we are NOT what has happened to us or what this world says we are. That is not what defines us. While we are grieving parents, that is not what our whole story has to be about. Although, at times, we feel that our story is over. We ask, how do we go on and live full lives without our sweet Sophie with us? I’m still not 100% sure I know the answer to that. BUT the Lord says that I am beloved. I am redeemed and accepted. I am holy and chosen. I am righteous and complete. I am not just another body on this earth to Him. He PURSUES me because He LOVES me.

My life feels over but, it’s not. I am given ‘peace that passes understanding’ (Phil 4:7). And ‘my God will supply my every need’ (Phil 4:19). He will give me the tools I need to heal and continue my life without her. While I will never be 100% whole on this earth again because of her absence, I am and will be whole for eternity with Jesus. Sophie is whole with Him waiting for me and as much as I miss her with my entire being-I can’t rush getting to her. I can’t curl up in the bed and let my life roll on by. Because of her, I have to make the rest of my life matter.

She taught me to see the big picture. To see that every single person I come in contact with has something going on in their life that isn’t outwardly expressed. You never know if the person next to you just lost their child to cancer. She taught me to truly not sweat the small stuff, to take a breath and think before I act or speak. She taught me to appreciate the things and people around me. Even if I do nothing extraordinary with my life-she changed my perspective and how I see the world and how I interact with the people in it. Most importantly, she taught me that Hope in Jesus is ALL that matters. It’s the only thing that we get to take with us when we go.

His plans for me are great. His plans for you are great. Stop living in what has happened to you and who the world says you are. Start living in who He says you are and the promises you have in Jesus.

“Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.” -Colossians 3:16&17

Be still and know who you are and most importantly, know WHOSE you are.

Advice for a cancer mom 

 I posted this list on my personal Facebook page on September 13th the I shared it on Sophie’s page as well. It was another night when I could not sleep and I had an idea to write out 10 things that I thought would be invaluable to brand new cancer parents. That list soon turned into 15, then 20, and finally I settled on 22. I honestly could keep going with more now that we’re even further on our journey and maybe I will write a Part 2 soon… we’ll see. 

But I wanted to reshare my list here on the blog. Obviously this list has several things specific to a cancer fighting family but, I think anyone that has a chronically ill child could find something here that speaks to them. I didn’t title it ‘Advice for a caregiver or cancer dad’ because I can only honestly speak from the heart of a cancer mom. While I’m sure my husband and family members agree with this list, they probably could also add things from their unique perspectives. So, I didn’t mean to purposely leave anyone out-it’s just written from my perspective as a married, mom of one. I know a single mom or mom with multiple children would have their own things to add to this list. My hope is that it will be shared with someone new to this life and that it will bring comfort and maybe even take a little stress off of some shoulders. 
Advice for a Cancer Mom

By: Shelby Skiles 9-13-17

1. Give yourself permission to rest. I tried the whole not eating or sleeping for 48 hours thing and it really wasn’t productive. You can’t do all of this alone. You get to go take a bath, get a massage, take a nap in a dark room with the door locked and your phone on do not disturb. You also don’t have to justify it to anyone. ‘I just need an hour’-No you don’t-you need a week but you can’t take a week off so take a whole afternoon and go walk around Target and cry into a latte (*cough* bottle of wine), buy some new yoga pants because that’s all you wear now, get food from somewhere you love with all the calories, then take a hot shower, pray it out and go back to your baby. 

2. You don’t have to fake it til’ you make it. Your kid has cancer-you don’t have to smile or talk or really do anything other than stare at a wall if you don’t want to. You don’t have to be the beacon on positivity if you don’t feel like it. Don’t be fake-be whatever you feel. And that may change 14 times an hour but, guess what, you’re kid still has cancer and you’re still the only one who knows what it feels like for you-so do what you have to. Stare at that wall. 

3. Don’t feel guilty about literally anything-within reason. I mean you don’t get a free pass to be horrible to everyone you meet but you do get a whole lot of grace in other areas. Not texting back, losing your temper, eating all the cookies, having 6 cups of Spark or coffee if you’re gross and like that 🙂 and not wearing makeup for a month straight…all guilt free. I eat sushi at least twice a week. Free pass. 

4. If you’re not nice to anyone else, be nice to the nurses. They have the power to let you sleep or be real loud at night. Sucking up with snack baskets is always accepted. And ask them the questions- chances are they’ve been doing this longer than the PA or resident that comes in once a day. And if they don’t know- they know who to ask so- nurses- keep them happy. Nurses ain’t happy, no one is happy. Plus they do the gross stuff when you just can’t clean up puke for the fourth time in one night. 

5. Don’t feel bad about how you discipline or don’t discipline your child during this. They-have-cancer. Obviously, you’re the mom so use your own discretion and judgement but, don’t feel like you have to justify their behavior or yours to anyone. 

6. Take notes about everything. Use a notebook and a blank calendar. You won’t remember what happened yesterday, let alone when the last spinal tap, blood transfusion, or IV chemo was. Keep up with it however works for you but, keep up with it. 

7. Share the journey. A Facebook page, CaringBridge site, CarePages, GoFundMe, etc. Don’t think ‘Oh there’s so many sick kid pages’-yep, there sure are- and your kid is now one of them. Kids get sick too, and it’s good to have the support. Also, for me, writing it out helps. 

8. Find a crying corner. You can hold it together in front of your child because usually, you cry, they cry. So, find a spot, don’t tell anyone where it is and go cry it out. It’s the only spot where you get to totally feel what you’re feeling with no witnesses. Cry, yell, pray, yell at God, laugh like a crazy person… whatever gets you through the day girl. 

9. Don’t Google anything. Just don’t do it. 

10. Ask for help. It’s uncomfortable, but people don’t offer to help if they don’t want to actually help. So, make a list of practical ways people can help- then share it. Grocery shopping, house cleaning, pet sitting, gas money, food gift cards, hotel stays, all good examples of stuff you just don’t have time to worry about. Let your people help you. 

11. Don’t try to plan anything ahead. People say ‘take it one day at a time’ and I rolled my eyes at that at first but, it’s true. Literally no two weeks have been the same or gone totally according to plan for us. If you’re Type A- like me- just give it up sister. Our kind don’t do this well. 

12. Ask questions. If someone says something you weren’t aware of, ask. If you don’t understand, ask for the normal people translation. Get medication print outs, ask for prints of blood work numbers so you know what’s going on. You won’t like all the answers but ask every question. And write them down! 

13. Trust your mama heart. If something seems off- speak up. If you suspect something is wrong- request tests, scans, medications, etc. You’re the mom- you know them better than any doctor or nurse ever will. If you have to say -you aren’t touching them until you call our specific oncologist-do it. If you have to stand in the door and say I’m sorry you’re not coming in here without gloves, a mask, a gown, and a thermometer across your forehead-do it. If you have to stand over them to ensure they scrub that line cap for 30 seconds-do it! And 9.5 times out of 10-they listen to you because they know you’re the MOM. They also know you’re exhausted and likely running on caffeine and dry shampoo fumes so they probably won’t argue with you. 

14. It’s ok to mourn your old life. From the second you hear the word cancer-it’s over. Your old life and the dreams and plans you had are now completely different. It sucks. You’ll grow apart from friends you thought were close-they don’t get it-it’s ok, you’ll miss a lot of family functions, you’ll feel alone a lot, your marriage will change, your priorities are now totally different, your plans for future kids may change, and it’s ok to be really sad about that. 

15. Help others when you can. Get snacks for nurses, ask if there’s another family on the floor that needs anything and make a care package, reach out to new families once you’ve been doing this awhile, advocate for bone marrow and blood drives, get toys for child life, or just be open to talking with other parents. Sharing your story helps them and you feel less alone. 

16. Find an outlet. Writing, coloring, Netflix, a reading list, Bible study, podcasts, painting, knitting, whatever it is…. do it. The days are long and your kid sleeps-a lot. And sadly the old ‘nap when the baby naps’ just doesn’t work in the hospital or when you’re scared to fall asleep because they might puke or stop breathing or wake up scared and need you. (See number 3: six cups of coffee=free pass)

17. Make peace with the gross stuff. Puke; snot, diarrhea, blood, pee, spit, sores, pus… all really gross… all stuff you will have to clean up. Put on some gloves and suck it up. 

18. Talk about it as much or as little as you want to. Some people feel better talking it out-some don’t. There’s no right way to do it. 

19. Help out. The days are long and you feel useless, especially at the hospital. So, do chores like you would at home. I like to take over changing the sheets, doing laundry, wiping down furniture with alcohol wipes, organizing supplies, etc. it helps you feel more ‘normal’.

20. Lean on your spouse or whoever you have to support you. I’m blessed with a selfless man that has always put me first and now is no different. You have to have a partner in this, not a punching bag. Go on dates- make each other a priority when you can and talk about real stuff. 

21. Try to accept that you can’t fix it. You can advocate for them, cuddle them, encourage them, change diapers, clean puke, and wipe blood but, you.can’t.fix.it. Lean on the Lord’s grace-beg for supernatural peace and grace to overcome it and adopt the only mentality that will keep you sane-it is what it is. You can’t change it, so make the best of it when you can and cry when you can’t.

22. Pray over that baby of yours every single day. Lay your hands on what came from your body (or your heart if they’re adopted) and you pray. Pray for healing and strength in Jesus’ name. Pray for specific symptoms, side effects, tests, and medications happening that day. You storm the gates of heaven every single day for your child because they are yours-given to you by the One who knew them before you did. He knew them before He formed them. It is your right and privilege as their mother to pray the kind of prayer over them that no one else can. So do it. Do it everyday and watch what the Lord does. Don’t pray so the Lord will act- that’s not how it works. Pray BECAUSE He will act. 
One of my favorite passages from Romans: 8:26-28

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.




I’m sure there’s more and I can only speak as a mother of one but, no one fights alone.
Feel free to share for any other moms out there that might need some real life truth.