Memories from June 25th

One year ago-June 25th-my sweet girl was finally home after spending 36 days in Dallas.

We were finding our ‘new normal’ at home with cancer. Daily steroids, oral chemo, 3 day chemo shots, nausea medicine, diaper rash regimen, Tylenol, Miralax, monitoring her temp 3 times a day, tracking her urine input and everything she ate. We were fighting toddler roid rage, insane hunger cravings, and that chunky face from steroids. We were cuddling on our couch, sleeping in ‘mamas big bed’, playing with all of our favorite things, and playing in her new play house outside.

I cherish these memories because we got so few days at home after her diagnosis. Out of the 231 days she was sick, we were only home as a family for 21 of those. 210 other days were spent at the hospital.

So these pictures of my chunky, steroid, Batman loving Punkin represent one of those 21 days. One of the happy days of being SO thankful to be home together and SO thankful for her. Days like this one taught me about [Joy in all circumstances]! I was learning that even though I had NO clue just how much suffering we would go through that my God was bigger and that each day was a gift. I was cherishing every day and moment with my baby because the next day wasn’t promised. We were living a nightmare but also living in hope and the joy of being her parents.

And here I am one year later, wishing so badly that she was here for a ‘one year later’ photo but, instead I’m here without her. I wouldn’t trade these memories though-she was fighting so bravely one year ago. She was taking all of the meds and pokes and uncertainty like a champ and while I miss her so much it physically hurts me-I’m so proud of her.

One year later, she’s been gone almost 6 months, and yet, God is still bigger and each day is still a gift. I still cherish every day and moment i had with my baby because the next day wasn’t promised. And i cherish my days now sharing her story.

We are still living a nightmare but we are also still living in the joy of being her parents and the hope of eternity with her.

#sophiethebrave #DoMoreForSoph #godisstillbigger #onedaycloser #ChildhoodCancerAwareness #MoreThan4 #childloss

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.

Another First. Another Day Closer.

I honestly didn’t know how I would feel about Mother’s Day much like I didn’t know how I would feel on Soph’s birthday. The anxiety leading up to it was pretty overwhelming. I’ve cried over little things in the past week more than I have in the last month combined. It’s so tough to think of a day where your children are to celebrate you…when your children aren’t with you anymore. I’ve been a mom for 5 Mother’s Days. In 2014 I was pregnant with our first and miscarried a week after. 2015, 2016, and 2017 were with my perfect Punkin. And then 2018 and my arms are empty.

So no, I had no idea what Mother’s Day would hold for me. I felt kind of helpless as it approached. Jonathan-always so conscious of me and my feelings-kept asking me how he could best love me on this day. He didn’t want to upset me by overdoing it OR by doing too little. Bless his heart-I wasn’t much help because I said ‘I just honestly don’t know how I’ll feel that day.’ I did know I wanted to stay busy and my sweet friends just showed up as they always do.

Friday was spent planting succulents with my sister….she says Incan’t kill them but the jury is still out on that. Green things don’t usually survive around me but, I’m willing to try. I spent the evening loving on my sweet friend Tami and Sophie’s bestie Addie Leigh at a gathering of a bunch of friends and their kiddos. Addie is doing so well in her treatment-it’s such a blessing to me to be able to watch her conquering cancer! It also helps my heart to help take care of her and I’ll forever be grateful to Tami for letting me ‘borrow’ her kids. 🙂 It’s also so great to be around people that know me, love me, and know that it’s ok to be normal around me but that it’s also ok to ask me how I am and it’s ok to talk about their life and kids.

I spent Saturday running around with my love and then dinner with some of our precious friends from church. Sweet Carolyn has left something on my doorstep every single Thursday since January 4th. The selfless way she loves me is a true example of what service should look like. We were able to sit and talk for hours and the best part-their daughter’s name is SOPHIE! I didn’t know how I’d feel being around her but oh-it was just so amazing to be able to hear and say the name I love so much. It was so so good for my soul. Our night ended on the back porch of another set of our friends just visiting and talking about life. I seriously am living life with the most amazing people. When I think of how good the Lord has been to us to put so many incredible people to walk this road with us-I’m just overwhelmed with thankfulness. I would most definitely not be functioning without my village.

So yesterday, I opened my eyes at 11:15AM. Jonathan had gone to church without waking me….because he is the MVP of all husbands and knew I very obviously just needed the sleep because his alarm almost always wakes me up. My sister and I joke that a great night’s sleep makes us feel like Disney Princesses when they wake up and, I had Disney Princess sleep Saturday night. I woke up to 47 text messages from the people I love. Words of love, encouragement, prayers typed out, memories of my sweet girl…all flooding my phone reminding me that I am SO loved. I woke up full of peace-which could only be the peace of the Lord upon me. I felt every prayer and good thought I know was being sent my way.

And Mother’s Day ended up being a pretty good day. Flowers from my bestie. More flowers from sweet friends. TONS of incredibly sweet and heartfelt Facebook messages and comments for me. The fact that people continue to take time out of their days to reach out to encourage me is just so humbling and again-reminds me how much I’m loved. I also had great workout in an empty gym-which is always a good thing! Errand running, herb garden designing, and manicures with my sister. Flowers, the most mushy and wonderful note from my love and those big, muscly arms he’s so proud of hugged me more times than I can count. He knows so well that when there’s nothing to say-a strong hug says it all. God broke the mold when He made Jonathan for me.

There were tears today. Tears as I looked at my favorite pictures of my girl. Tears as I sat at the cemetery and wiped away the dirt. Tears as I placed the fake flowers I finally bought because it kills me to have dead and gross flowers there on her spot. Tears as I knelt-like I always do, touched her name, and said ‘Bye my Punkin-I love you so.’ Tears as I read so many sweet messages that deeply touched my heart. Tears as I read the words my husband-a man of few words-poured onto paper for me. And tears as he held me because she’s supposed to be here for these days. There were tears-but also so much joy.

I ended my day at dinner celebrating my precious mother-in-law and laughing with the best family anyone could marry into. (Seriously, be jealous.) And then the famous Skiles sing-a-Long came to my house, ending with more tears as they sang Silver Wings-the song that soothed my Soph in those last days. A song that speaks so clearly to me about my little love going to be with Jesus. It’s not a religious song but, it touches my heart each time I hear it and puts me back in that hospital bed, surrounded by both of my families, holding my 25 pound-fuzzy headed cuddle partner, rubbing her smooth hands, and kissing that head. Sweet sweet memories tied to that song that I am forever thankful for.

The grace that overwhelmed us in those last 13 days is the same grace that covered me yesterday. I felt enveloped in love and peace that could only be from my Father and I like to think from my Punkin too.

I’m so honored to have been her mama. I’m forever changed because of her life, her bravery, and the promise of Eternity with her and my Savior. I’m One day closer.

“Silver wings,

Shining in the sunlight,

Roaring engines,

Headed somewhere in flight

They’re taking you away

Leaving me lonely

Silver wings

Slowly fading out of sight

Slowly fading out of sight”

Mimosas and Kindness

A few weeks ago ( 4 Days after Sophie’s birthday to be exact) I took my first solo trip to see my sweet friend and mentor in Pensacola while my husband was on his brother’s bachelor party trip. I tackled security, airport crowds, eating alone, terminal waiting, and flights alone. I’ve historically not been great at being alone so I wanted to make the most of my time. I ate a nice lunch with a mimosa in Dallas while listening to our church’s sermon Podcast.( Bethel Bible Church on the Podcast app….you should listen to it!) While eating and taking notes I of course started thinking of my girl and of #DoMoreForSoph. Anyways, my waitress at lunch was super sweet and I decided to start my trip by telling someone about my girl and encouraging her with a big tip and a note! It was something small but, I hope it made her day as much as it made mine!

Then I boarded my first flight and we ended up with a delay on the runway because the airport we were flying into was experiencing a lot of incoming flights. People moaned and groaned and the flight attendants were kind and smiling. I just ate my free pretzels, had mimosa #2, and watched another episode of ER. We landed in Houston an hour late and then our connecting flight on the same plane was delayed due to an unruly passenger having to be removed by TSA-it was exciting.

Anyways, people are just rude on planes sometimes especially when there’s delays. The flight attendants and pilots were so kind and positive and kept smiles on their faces even though I know those days are so stressful for them. I decided it was a good time to spread a little more Soph love and handed the head attendant a note and some Sophie The Brave on my way off of the plane.

I don’t share this for any pats on the back-I’ve had my fair share of eye rolling and sighs when I get inconvenienced but, I really have tried to not sweat the small stuff after what we experienced with Sophie. I know I’ve written about feeling rage a lot and there are days that I fail at being positive and i sweat ALL the small stuff. Overwhelmingly though, I really do try to just smile at negative stuff. Life is just too short to complain all the time-my goal moving forward is to try to spread joy more than complain and sharing my girl’s story is the perfect way to do that!

So, next time you’re delayed at an airport, stuck in traffic, at the DMV, experiencing rude people, having a stressful work day, exasperated with your kids, irritated with your spouse or any number of other inconveniences that come up….stop, take a breath, and remember that life is short and you can change your whole day or someone else’s by just choosing kindness.

#SophieTheBrave #DoMoreForSoph #GodisstillBIGGER

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!