Nurses

Six Months

Six months ago was probably just a day in January for you. You probably were either still enjoying Christmas break or you were getting back into the post New Years swing of things-ready to take on 2018.

Six months ago, my husband and I were holding our baby for the last time. We haven’t shared specifics about that day because most of it is just for us but we held her as she took her last breath.

We held her after she was gone. I helped the sweet child life specialists take her hand and foot prints and signed way too many papers. I bathed her and put her lavender lotion on. I changed her diaper for the last time-even though she didn’t need it. I put a pretty pink headband on her head and socks on her little feet. I put a Minnie Mouse hospital gown on her and wrapped her in the blanket we brought her home from the hospital in. I kissed every inch of her that I could and rubbed my face on her fuzzy head. I held her until it was time to lay her flat and I laid next to her while our family said goodbye one at a time. I didn’t leave her side until I had to. I held her as long as I could and then I gave very specific instructions to the chaplain about not leaving her alone.

Then we left. I quite honestly don’t remember much about leaving the hospital. I’m told countless nurses and techs lined up to tell us goodbye-I don’t remember that at all. I don’t remember really anything until we got in the car.

Six months. Half of a year. At six months pregnant, a baby is considered viable and the doctors will try to save a premie. Six months is a half birthday. A lot can happen in 6 months.

Six months isn’t a long time but, it can also feel like the blink of an eye. Some days it feels like it’s been years since I held her and on other days I can feel her weight in my arms.

I’ve lived six months without her and I’ll keep living six more months….then six more….and on and on it will go until The Lord calls me home.

People say-I don’t know how you do it-and My answer is-I don’t do it, alone.

“But now thus says the Lord, he who created you, O Jacob,he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine.

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you” Isaiah 43: 1 & 2

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This photo is real and raw. It was snapped by my sister about 10 minutes before we kicked everyone out and about an hour before Sophie stopped breathing. We knew it was time and Ericka was not our tech that day but she came in to hold me and pray over us. I love that you can see her Beads of Courage in the corner. It’s a testament to just how much she went through. And I love that fuzzy head. It’s a hard picture to look at but, it’s real. And I’ve promised transparency.

#SophieTheBrave #DoMoreForSoph #Godisstillbigger #OneDayCloser

Cancer: One Year Later

As a mother, you worry about all kinds of things. Is my child hitting milestones? Is she eating the right things? Are we raising her well? Does she have an ear infection? All of the ‘normal’ things that parents think about as they raise their children.

Cancer was never even one of my worries.

Cancer happened to other families. We heard stories and said ‘Oh gosh I can’t even imagine. I don’t know what I would do-I just wouldn’t be able to get out of bed.’ We changed the channel when the St. Jude commercial came on because bald kids made us uncomfortable. We put our change in the ‘Kids Miracle Network’ jars because we hated having change in our pockets. We’d donate $20 to a GoFundMe, signed up for a 5K, and bought some T-shirt’s to support ‘those poor cancer families.’ And then we went about our sweet little sheltered, happy life.

There’s nothing wrong with that life. Until your eyes are opened to just how BIG the world really is.

On May 18, 2017, I went to work-like any other weekday. We had a field trip that day-which is a stressful day for a teacher. I was hot and sweaty and exhausted after a full day of wrangling 24 kiddos, handing out lunches and waters, riding on a school bus (which is horrible), and walking around with a backpack full of first aid, permission slips, inhalers, and sunscreen. I got home to my Sophie-like every other weekday. Her grandmother updated me on her day, said goodbye, and we has our after school home time-like every other day.

Except. Sophie had been hospitalized in March for a weird breathing episode and then diagnosed with asthma a few weeks before and we were monitoring her breathing and doing breathing treatments 3 times a day until we could get her into an allergy doctor. That was stressful but, she handled it like a champ and did her ‘breathings’ with no problems. Heck-half of the time she would fall asleep holding the mask on her face! It was so cute. When it was done, she’d pop up like she had been awake the whole time and shout proudly-ALL DONE!

On this day-she was breathing really hard and I didn’t like it at all. So, I did what most moms do-I called for opinions. I called my precious friend Monday, a nurse and fellow asthma mama and told her my concerns. She advised me to go ahead and do Sophie’s bedtime breathing treatment early and take her to the ER after that for evaluation because, you don’t play around with a 2 year old’s breathing. I called Jonathan and told him to head home for what would probably be a long night. Then I pulled my little love into my lap and started up her treatment. As I’m doing that I decided to call my coworker Toni-another asthma mom-to tell her what was going on and to let her know that I might need to take off the next day-we had track and field day the following day so this was SO not a great time for us to be sick! As I’m on the phone with Toni-my world fell apart. Sophie went limp in my lap and started turning blue. I screamed ‘TONI SHES NOT BREATHING I HAVE TO CALL 911!!!’ And hung up. I’m holding the breathing mask on Sophie with one hand and shakily calling 911 with the other. She-thankfully-came back around quickly but was still very pale and lethargic in my lap. At that exact moment Jonathan walked in, with no clue what was going on. He walks in to us on the floor, Sophie unconscious and me sobbing on the phone. The Lord was very obviously working in him right then because he immediately grabbed the diaper bag, a phone charger, the iPad, and my wallet with insurance cards in it. He even grabbed my shoes because I was barefoot.

The 911 operator stayed on the phone with me until The ambulance arrived and I carried her out, barefoot, with Jonathan right behind us. We got her on the gurney and oxygen on her and she came around very quickly. We took off and Jonathan-bless his heart had to follow us in the truck.

Long story short-we ended up at the Children’s ER with an X-ray of a softball sized tumor in her chest. We were wheeled up to the ICU at 4 in the morning because she couldn’t lay flat. Her bed was propped up to sitting because when she laid flat, she stopped breathing due to the tumor pushing on her airway. Our world was halted.

We started steroid chemo the next day to stop the tumor’s growth.

Cancer. A word no parent should hear.

Most of you know what all transpired from there and I honestly can’t write all of that out right now. But the point is-Childhood Cancer happens more than you think it does. It happens whether you’re rich, poor, white, Black, Hispanic, happy, sad, Old, or young. It’s real. It happens. And you’re not a cancer mom…..until you are.

One year later and I’ve learned way more than I’d ever want to learn.

I’ve learned words and acronyms like Nelarabine, mediastinal mass, NPO, PRN, stomapowder, chemo rash, fungal workup, PET Scan, ANC, platelets, hemoglobin, neutrophils, immunosuppression, Bactrim, neuropathy, isolation, port access, bath wipes, spinal tap-LP, intrathecal chemo, vincristine, SCU, neuro-rehab, chemo toxicity, Methotrexate, zofran……..And so many others.

One year since my world became much bigger. While I’m not thankful that my girl is gone…I am thankful that I’m more aware of how big the world is now. I’m more aware of the HUGE need for childhood cancer funding. I’m more aware of how incredible nurses are. I’m more aware of what parents in hospitals go through. I’m more aware of the long term need cancer families have…..I’m more aware. And because I’m more aware, I can do something about and you can to.

So today-in honor of one year since Sophie was diagnosed-will you consider #DoMoreForSoph and giving to Childhood cancer research? They currently get 4% of government cancer funding.

4%

Our favorite research organizations are:

Gold Network of East Texas

St. Baldricks

Alex’s Lemonade Stand

Sadie Keller Foundation

All of these support childhood cancer research, support families currently in treatment, and help families that have completed treatment but still need long term support.

Sophie the Brave Day

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

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

Some ideas of examples:

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

-Pay for someone’s meal in line behind you

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

-Send someone flowers or an encouraging note

-Take your kids on a special date

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

– Find a local volunteer opportunity

-Donate school supplies to your kid’s teachers

-Take a meal to someone that might be struggling

-Let someone know you’re praying for them

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

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

-Sponsor a needy child through Compassion

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

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

-start collecting items for Operation Christmas Child in December

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

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

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

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

A heart that is Broken, yet full

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

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

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

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

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

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

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

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

Please be praying for:

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

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

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

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

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

Thanks friends.

6 weeks

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

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

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

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

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

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

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

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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

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.

What does grief look like so far?

It’s been 15 days. Most days we are ‘ok’ but, there’s not a second that things don’t feel wrong. We feel like we are supposed to be parenting yet, there’s no one here to parent. I should be making snacks, packing a diaper bag, arranging a baby sitter, reading books…….but I’m not. It’s only been 2 weeks and I have no idea how I’m going to live the rest of my life without her.

Grief. It’s a weird emotion. We all know there are stages. Denial. Anger. Bargaining. Depression. Acceptance. We’ve been grieving in one form or another since our life changed on May 18th. It cycles over and over, sometimes all in one day. We grieved our old life, our child’s innocence, our relationships with everyone else in our life, and our little bubble of happiness. Then we kind of got acclimated to the cancer/hospital lifestyle and it started to feel normal. A new normal. We had resigned to that being our life and we were going to handle it because we could do this if it meant she’d be ok. We could put our life on hold for 3 years and get her through this.

Then August 7th and relapse happened. Again we started grieving. We fought HARD that month to keep her alive and then we watched as the horrendous rescue chemo took all of her independence away. So again, we grieved-her voice, her walk, her playing, her moving on her own, sitting up, eating, drinking….. we grieved as it all went away. Then YET AGAIN we started adjusting to a new normal. Chemo, speech, physical therapy, occupational therapy, massage therapy, mouth care, feeding tubes, new meds…..all became normal. And finally, another relapse and then she left.

Grief has taken so many forms since January 4th at 2:11PM. It looks like so many things and I quite honestly don’t have the energy to put them into full sentences so, I guess a list will have to do. What does grief look like? It looks like…..

-Holding her for the last time because it’s time to lay her flat

-Giving the last bath and putting on lavender lotion because it’s her favorite

-Signing partial autopsy permission forms

-Writing ‘mom’ next to relationship to patient for the last time

-Leaving her in a room alone and walking out of the hospital

-Leaving her giraffe with her so she’s not alone

-Picking out clothes, Crocs, a bow, and what we wanted in the casket with her

-Laying on the kitchen floor crying because her pictures are on the fridge

-laying her Mattress on the floor and trying to find her smell

-Cleaning medical supplies out of the bathroom because you can’t stand to see them anymore

-Being in the funeral home building at the same time as her but not being able to see her

-Watching my husband fall apart over and over as we sit on the bathroom floor together

-Getting enraged at really dumb stuff

-Irrationally hating everyone with healthy kids

-Sniffing everything trying to find her smell- pacifiers, toys, blankets…..

-Sleeping with 2 blankets and a giraffe because they were hers

-Carrying the pink blanket all over the house with me

-Eating once a day and losing 20 pounds because you’re constantly nauseous and at the same time hungry

-Feeling like you should be parenting but you can’t

-Knowing no one has a reason to call you mom anymore

-unfollowing every mom blog that you’ve gotten advice from for 2 years

-Not leaving the couch all day

-Not being able to watch them close the casket

-Your arms ache because they’re empty

-Resenting everyone for going back to ‘normal’ when your life is still blown apart

-Reliving her death over and over and seeing her laying there perfect and still

-Praising the Lord for her freedom while crying out for her to come back

-Worshipping

-Sitting in the shower to cry

-Standing in front of hundreds of people and giving your child’s eulogy

-Seeing her everywhere-her hoodie towels in the cabinet, her raviolis in the pantry, and her dishes in the kitchen

-Laughing because it’s ludicrous that you’re sitting on the couch at noon instead of at work or the hospital

-Feeling like you’ve moved away because you miss the hospital and the nurses

-Doing stuff you hate because she did much worse for 8 months

-ignoring your phone for days and days

-Having no purpose because your full time job for 8 months is over

-Laughing with friends then feeling bad about it

-Falling asleep on a couch in a room full of 30 people

-Letting your friend’s 2 year old fall asleep on you watching Mickey because you’ve missed it so much

-Sitting at the cemetery, alone wondering how in the world this is your life

-Relearning how to be married full time

-Seeing a Trolls alarm clock at Kohl’s and losing it

-Getting a ‘mommy and me class’ flyer in the mail and sitting on the curb by your car sobbing

-Aching for a baby but, knowing you just want your baby back

And a thousand more things that pile up each day

I wish I had a redeeming moment to add to this. We aren’t just sitting on the couch crying all day but, we are sad everyday….all day. There’s moments of happiness in our days but, still we are sad. It feels wrong to be here. Every part of every day feels so wrong. My arms physically ache for her. My husband can’t stop watching videos and looking at pictures. We are broken.

BUT GOD IS BIGGER. BIGGER THAN CANCER, BIGGER THAN GRIEF, BIGGER THAN US.

Today, Jonathan opened his Bible and it opened to Jeremiah 31 and its there that I’ve found hope today. While we are oppressively sad and crushed by the weight of her absence….there is still the promise of joy. There’s hope in what’s to come. And for now, we try to….yet again….find our new normal and continue through the process of grief.

Jonathan and I are getting on a plane tomorrow and heading to California for 8 days together. We are packing those days full or touristy activities, food, shows, shopping, and marriage. Please, if you think of us, be in prayer for safe travels and for true connection with each other. Please pray for our broken hearts and for peace that can only come from Jesus. Pray for God to show us ‘what’s next’.

For Sophie…

I’ve taken a couple of days to process and absorb since the Celebration Service of Sophie’s life on Saturday. I still don’t think I have the words to fully describe what that day was like for me. Words like holy, perfect, sad, and love come to mind but, that’s only 4 words and a day like Saturday deserves way more than that. Maybe in a few days it’ll come to me.

If you missed the service live, here is the link to watch it Sophie’s Celebration

I also wanted to post my entire speech. I read a shortened version on Saturday for time purposes so here is the full speech.

I wrote this on December 22nd After we got the news that Sophie’s cancer had returned. I couldn’t sleep and this just came out and I’ve added a few things in since she passed. We all know I don’t ever write anything short so, here goes.

All I’ve ever wanted to be is a mom to a little girl. I became a teacher because it’s a great mom’s job even if the money isn’t super glamorous. I’ve never cared about having a lot of money or things-I just dreamed of a good man to love me and give me babies to care for. I dreamed about brushing and putting bows in hair, playing tea parties and dress up, lazy movie days cuddled on the couch, playing at the park, and endless laughter. The last 2 years and 10 months of being Sophie’s mom have far exceeded anything I’d ever dreamed about. 1,021 Days. I loved her from the second that pregnancy test was positive. I loved her as I laid on a couch for 12 weeks of bed rest just trying to get her here when a massive blood clot threatened my pregnancy and her life. I loved her through 13 hours of labor and 4 days in the hospital. Through colic, and reflux, and ear infection sleepless nights-I loved her. I’ve loved every single second of being her mama.

She was perfect-never a great sleeper-but perfect nonetheless. She was happy 95% of the time. She was caring and compassionate-sad parts in movies made her cry and she always brought toys and cuddles to any friend that was sad in the nursery. She gave the best hugs and kisses always followed by a smile and ‘I loo’. She loved fiercely. She is my greatest accomplishment. Witnessing her be so brave and strong over the last 7 1/2 months has been the absolute privilege of my life. Words can’t fully describe just what children endure in hospitals and I could never be able to fully articulate just how brave she was. Far braver than I’d ever be in her shoes. Before she lost her voice she’d still tell the nurses ‘no thanks’ and ‘I’m brave’ even when they were giving her owies. Although they’ll all tell you that even though she said sweet things, her eyes betrayed the true sass within. Even when relapse and chemo took her voice and her function-she was still so expressive with those eyes. Oh how I miss those eyes.

To say this is hard is an understatement. Nothing will ever be the same again. Our friendships, relationships, our marriage, nothing about our lives will ever be the same. There’s now a Sophie sized whole in me. 36 inches and 25 pounds of emptiness that only Jesus can fill. I don’t understand this and if the Lord sees fit to explain it to me here on earth I’d gladly sit and listen but, I just don’t believe things like this are for us to understand. And while that doesn’t make any of this ok or make it hurt any less, it does provide comfort that He knows, He understands, He hears us, and He’s here. He’s here to fill that hole. Because as much as I love her, He loves her more. He loves her so much that He needed her more than we did for whatever reason. It comforts me to know that she’s not alone. She’s not suffering. She’s not being poked and messed with. She’s not bed bound and frustrated. She’s running, and dancing, and singing. She’s playing tea party and dress up and getting her hair brushed and bows put in it….but now, she’s doing all of it with Jesus.

We prayed and prayed for a miracle and people ask why didn’t we get It? But the truth is, we got several. It’s a miracle that we got her to the hospital in May and caught the tumor. It’s a miracle that we had 3 months of her responding to treatment and still getting to be her active self. Its a miracle that instead of being ripped apart, our marriage is the strongest it’s ever been. It’s a miracle that we didn’t lose her on August 7th when she relapsed and everyday since That day has been a miracle. And though we didn’t get our complete healing on this side of heaven, the fact that Jesus was here on this earth and died for our sins so that He could give Sophie complete healing in heaven….is the ultimate miracle. If you don’t believe anything else-please believe that. If you find yourself believing that for the first time, I know plenty of people that would love to talk with you about that. Bad things happen because this place- this world is broken. Romans 8:18 says that ‘The pain you’ve been feeling can’t compare to the joy that’s coming.’ And I know that’s true. One day, we’ll be reunited with Sophie and we’ll feel the joy of praising and worshipping our savior together forever. It doesn’t ease the very real, horrible earthly pain that is threatening to choke and consume me but, that doesn’t make it less true. I don’t understand why we don’t get to keep her with us here. I don’t understand why she had to suffer such a horrible disease. I don’t understand why cancer floors in children’s hospitals across the nation are so full that they have kids waiting at home for a bed to open up. I don’t understand any of it but, He’s still a good, good father and he loves us. He loves Sophie. He is bigger than cancer and ALL of the bad stuff. I’ve wanted to be very clear about that from day one of this journey. This was not for nothing-even if we can’t see it right now.

It can’t be for nothing. Sophie can’t have fought this awful disease for 231 days for nothing. So I’d like to challenge each of you sitting in this room and watching on the video to do more. Do more. Do more for people than you normally would. Value people more than your stuff or your job. Pray more. Get involved with the body of Christ. Let people in. Give more of your time if you can’t give your money. Put the phone down and be present with your people. Spend less time complaining or arguing on social media and more time doing more for the Kingdom. Donate more to an organization than you used to. Find a cause you’re passionate about and get involved. Jonathan and I are currently figuring out ways for us to do more. We are discussing how we can help. Visiting the hospital, donating toys to child life, raising money for research…Our kids deserve more than this. They deserve full lives free from hospitals and poison. So I’m going to do more so that other kids get the life Sophie didn’t. I’m partial to childhood cancer organizations but, whatever cause you can get involved in…do more for it. Do more for Soph.

I’d like to say a few thank yous even though I never could fully express my gratitude.

To each lab tech, anesthesiologist, radiologist, nurse practitioner, therapist, and basically any medical personnel that we have worked with-thank you from the bottom of our hearts for what you do and for how you loved and treated our child. Dr. Watt, Dr. Slone, and Dr. Howery thank you for what you do I know it can’t be easy at all after seeing it day in and day out. You get truly invested in your patients. They are not just bodies in a bed or names on a sheet. Each of you has cried with us and hugged us and we are eternally great full for you for doing everything in your medical power to save Sophie- we got 7 more months with her because of you.

Specifically to her nurses-I think we all know I love nurses- in fact if you’re here will you stand up real quick for me. And if you’re watching on the video know this is for all of you-I can’t express enough how incredible each nurse we’ve had has been. When we found out Sophie was terminal, Jonathan and I said ‘send us back to Children’s’ immediately. We wanted to be with the family that has loved her and us since May. It was the best decision. For 13 days we got visit after visit, hug after hug, and prayer after prayer from almost every nurse we’ve ever had. Some of you even came in to sing with us during all of the days of Sophie’s party. Knowing they were back in charge of Sophie’s care brought so much comfort to us in her last days. I think she was even more at ease and comfortable knowing she was ‘home’. You are the hands and feet of Jesus every single day. Never doubt that you’re all doing exactly what you were meant to do. You have all touched our lives and we will honestly miss seeing you everyday. We’ve already missed you in the last week. You are part of our family now and we will be back to see you.

I’d also like to thank the 50,000 plus people that have followed our journey over the last 7 months on Facebook. Whether you’ve followed since the beginning or have come alongside us at different points-Thank you for your encouragement, your messages, and most importantly your prayers. We never dreamed Sophie would reach so many people so thank you for loving her like your own. Your prayers have meant more than any donation ever could. We have felt strength and peace for 7 months that can only come from the Holy Spirit and mass prayer. We’d have curled up and given up months ago if it was just us. Thank you to Every single person that has helped us. If you donated money, gift cards, your time to a fundraiser, bought a t shirt, played in the basketball tournament, bought anything from a fundraiser, sent gifts, care packages, food, coke tabs, or gift cards…..we could never ever say thank you enough. We have been so provided for financially and with love that we were able to fully focus on Sophie and we could never repay that. Thank you to Bethel. Our home and family here have rallied around us and carried us with your prayers, donations, love, and time. Every card, visit, cleaning our apartment, stocking our pantry, feeding Jonathan when he was home alone, call, text, and group prayer session has been so appreciated. We love this place and we love each of you. We need you now more than ever. Jessie and Alyssa, for taking on cemetery and funeral arrangements so I didn’t have to make those calls-I’m eternally grateful. Tami and William for walking this journey with us so fully while you walk your own cancer road we love you so much and we are still here for you and Addie no matter what. My dear new friends and fellow cancer moms walking this journey still- it has been an honor praying for your babies and living the last 7 months with your love, texts, advice, tears, hugs, and triumphs. I love each of you more than you know. Together we can do more for our babies. Our friends and family that have stepped up to check on us, sent an I love you text, had a movie or hang out night, visited us at home and at the hospital, made us laugh and feel normal, took us to lunch or just flat said this sucks I’m sorry I can’t fix it- just thank you for your love and for your time. Those mean more than anything. To Brownsboro ISD, Mr. Hunter, Ricky, my 3rd grade family, and the rest of CES-thank you for everything. For donating sick days, cards, money, gift cards…for hugs and prayers. For allowing me to keep my insurance and paychecks while being able to be a full time mom-I’m truly eternally grateful. That’s been the biggest blessing we could’ve ever asked for. Kissam Elementary-you guys prayed Sophie into this world and you’ve held me and her ever since and I love you all so much. I’m sure there’s hundreds of other thank yous I could give but I need to thank the most important people.

To our brothers-Bonner, David, Solomon, Scott, and Tyler-thank you for loving our Punkin. For being the best and most fun uncles anyone could ask for. I know you each wanted to be with her and us more but we, and especially Sophie know how much you love us. Thank you for being our sounding boards when we need you and for dropping everything to come when you could. For coming over for movie nights and dinner and for making us feel more normal in a place that’s anything but normal. Thank you for spending her last 13 days in the hospital with us, playing music, singing songs, making us all laugh, cuddling her, and holding onto us. We’d be lost without you.

To my daddy-thank you for showing me the kind of man that I should be with- a man that takes care of his family at all costs and loves them so fiercely. A strong man that is really a big softy on the inside. Thank you for driving hours daily every week yet still coming to be with us as much as you could. Thank you for the laughter and smiles and for being the best Pappy in the whole world for Sophie to love. I know she loved you more than pizza and so do I. Randy-I don’t know if thank you can cut it for everything you’ve done for us. Thank you for raising such a good man and for being the best boss he could ever ask for during this. Jonathan is so lucky to have your wisdom and counsel in life but also daily at work. Thank you for bringing joy and music to Sophie’s life and for continuing to show us what it looks like to Praise Him in the Storm. I know Pop loves punkin- and punkin definitely loved Pop. MaryDale-thank you for being there for me to watch Sophie while I was at work. Knowing she was at home with you gave me such comfort even though I hated being away from her. For putting your life on hold to be with us every week since May-for staying a lot of Fridays so that I could be home with my husband for a semblance of together time. And for praying so fiercely for all of us and for never ever losing the glowing optimism that I know we all love about you so much. Thank you Jolly-she loved you so very much. My mama- there aren’t enough words. You’ve never gone more than 14 days without seeing Sophie. You’ve been my sounding board, my 1AM advice call, my punching bag sometimes, but most importantly my teacher. You taught me how to be the best mom-loving so much it hurts and showing it everyday-at least I hope that’s what I’ve done. For retiring early and putting your entire existence on hold for us-I’ll never be able to thank you enough. You know there’s so much more I have to say to you but I just can’t and get all of these people home today. I love you and Mammy’s Darlin loved you too-so so much. Jacy-my best friend since you came into this world. Loving you trying to keep you in line was my first crack at being a mom. I’d have been lost without you in my life. You know when to build me up and when to keep me humble ha. Thank you for putting Sophie first and your business and your own health second. You are the original spartan and she learned how be silly and sassy and more importantly how to be a fighter from you. I’ll forever be thankful for the hundreds of photos you’ve taken of her. Because of you, she’ll live forever in print.

Jonathan, the love of my life. Thank you for making me a mom to two angels. Thank you for 5 and a half years of the kind of love and marriage that people write novels about. Thank you for showing me what true sacrificial love is. Thank you for being the most incredible daddy. Not one person that ever saw you with her could doubt that she was your whole world and I am your moon. I’m so thankful I get to live this life with you. If someone would’ve told me 7 years ago that I’d have you but, have to go through this…I wouldn’t change a thing. You’ve made me who I am and you helped me become the best mom I could be. You are the one my soul loves. I love you so much and we will get through this like we have everything else-together, holding hands.

If you have followed us on Facebook, you know that I find a lot of comfort and inspiration from Ann Voscamp. I was reading her Christmas devotional on the 21st-the day before we got the devastating news that we were out of options. This particular part really hit my heart hard and I actually screenshot it on my phone to go back to later. Now I know I was touched by that so I could share it here and I’d like to close by reading the last few lines of that page.

“You always get your Christmas miracle. You get God with you. God gives God. He withholds no good thing from you. And the good things in life are not so much health, but holiness. Not so much riches in this world, but relationship with God. Not so much our plans, but His presence. And He withholds no good thing from us because the greatest things aren’t ever things. He doesn’t withhold Jesus from you. Christ is all your good, and He is all yours, and this is always ALL your miracle. No matter the barrenness you feel, you can always have as much of Jesus as you want.”

Finally, My sweet baby love. Thank you for letting me be your mama. For teaching me more about love than I could’ve ever known without you and for helping me believe in miracles. Thank you for showing thousands of people what is means to be brave and that God is BIGGER. I promise to do more with my life because of you and make you as proud of me as I am of you. I love you so very much-save me a place at the tea party.

Christmas Miracles?

Big news from Team Sophie. We are finally getting out of Limbo and starting the stem cell transplant process! I have a lot of feelings about that-happy, excited, scared, worried, thankful, terrified, stressed, relieved…mostly I feel insane 90% of the time but, oh well….I’m owning that. There’s also about 693 details to go over in this process but, it’s late and my child is actually asleep so, this needs to be relatively short so I can sleep too. I mean, we all know I don’t write anything short, again I say, oh well.

So, Sophie finished her 4 week chemo plan on Friday and today we were supposed to meet with her doctor to discuss what’s next. We were expecting him to be in favor of more chemo, more therapy, and no transplant but, he came in and kind of shocked us. The team agrees that it’s go time for transplant. Ideally, we’d spend months in rehab getting stronger before transplant but, we just don’t have that kind of time. It’s a miracle that her cancer has (seemingly) stayed at bay on this light chemo regimen and no one is comfortable waiting much longer. It’s terrifying waking up each day wondering if there’s cancer exploding in her body while we wait. Every tiny new symptom brings on fear of relapse and a minor panic attack. (I maybe spent 10 minutes on my bedroom floor trying to keep breathing the other day when she had a weird breathing episode.) We just aren’t going to get a ‘perfect’ situation. She has made enough small progress in therapy that her team feels the risk of a life threatening complication is significantly lower. She’s doing a much better job protecting her airway, swallowing her spit and even some liquids in speech, she’s tolerating sitting up with help, can move her head around on her own, and is even trying to cough and clear her throat. That all seems like small stuff but, she wasn’t doing ANY of those things a few months ago. Baby steps. She’s essentially like an infant and plenty of infants have survived transplant. SO BASICALLY her doctors think the risk of going to transplant now is far less than the risk of her cancer coming back if we wait any longer. We obviously are still worried and apprehensive but, already it feels like a slight weight is lifted simply because we are back on somewhat of a plan. Transplant is our only option for possible long term cure so, it’s now or never basically.

Today is has been 7 months since the day our world stopped. Anyone else see the irony there?

Like I said above, there’s A LOT of detail that I will explain in due time but, for now, here is a basic timeline of what the next few weeks will look like.

Tomorrow, we will start the ‘transplant workup’ process. All that happens tomorrow is the nurses will draw quite a bit of blood to send off for literally a TON of testing. They will test for anything under the sun-all of the basic levels they always test for, any disease or virus that could be hiding in there, and a ton more than I don’t even know about. They will also call get the cord blood samples reserved for Sophie sent to Cook’s. Wednesday, she will be going under anesthesia for a repeat PET Scan, bone marrow biopsy, and spinal tap to insure that she is still cancer free. Her counts haven’t shown any reason to think she’s not still cancer free but-it’s still nerve wracking. At some point this week they’ll also do a hearing test and an EKG to check her heart function. That’s pretty much it for now, she’ll continue to get daily therapy while we wait. At some point next week, she’ll go under to get her central line placed in her chest for more IV access during transplant then we will sit down with her team for one more meeting to go over all of her work up results. Around January 2nd we will leave the rehab floor and head up to the transplant unit then she’ll start her conditioning chemo on the 3rd. She’ll get pretty strong chemo from the 3rd through the 10th then TRANSPLANT DAY is tentatively set for January 11th. I’ll write all about what transplant will look like soon-for now we have to get there.

Please don’t forget about us and keep praying! We need it now more than ever!

1. Pray that Sophie handles anesthesia well on Wednesday and that all of her tests show that she’s still cancer free. Add to that continued prayer that she’s healed forever-transplant is her cure!

2. Pray for divine progress over the next 2 weeks in therapy-that Sophie can take advantage of every second she has in therapy before transplant. Christmas miracle progress! Full restoration.

3. Pray head to toe for full body protection during transplant. Pray for her airway and respiratory system. Pray that none of this makes her neurological symptoms worse.

4. Pray against ANY infection or sickness-she will have ZERO immune system for awhile and that’s scary. Pray health over her caregiver team too! We are all chugging Vitamin C.

5. Pray for our Christmas. It looks very different this year and to be quite honest, I’m dreading the next few days. Pray for joy.

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.