About last night…

I’ve been a bit weepy today but, for a good reason. Last night, for the first time, I dreamed about my Sophie and remembered it when I woke up. Jonathan has had several dreams about her and I haven’t had any. Then I woke up this morning with tears rolling down my face as I recalled precious dreams.

I dreamed that the three of us-my sweet little family-were at our little pink house just playing. It was like a movie of our perfect little life together. Jonathan was chasing her down the hall to hide from me behind the long maxi dresses in my closet. Sophie running to hide in her poop spot-the laundry hamper. Her slamming her door and us popping into her room after her. Walking laps outside in the yard ‘powwing’ bugs, looking for sticks and picking yellow flowers. Piled under stuffed animals watching a Trolls on our Sittin’ Raffe chair. Tea parties, book reading, stickers, and hours of her sorting all of her toys into piles. We prayed before dinner and ate our Mac-n-cheese and chicken nuggets. Bath time was had with our little duck and brachiosaurus song. Then we brushed teeth and got in the big bed to watch Curious George.

The perfect day. The perfect dream. Our perfectly imperfect life.

What I would give to have it back. But I can’t get it back, at least not here. So, until I can have it back in Eternity, I’ll be forever thankful that I was allowed to have that life. It was far too short and the life it’s been replaced with has a Sophie shaped hole in it that will never be filled. But I can truly, without regret, say that we LIVED a full life with her while she was here. She knew she was loved. She was played with and read to. She was chased and tickled and kissed. She was sang to and cuddled. She ran the house but was taught boundaries.

She lived.

And even though she’s gone, that life lives on in us, in our memories of her, and in our dreams.

Fear & Faith

You can do everything ‘right’ and that terrible thing that you’re afraid of most can still happen. It’s a product of the broken world we live in. You aren’t in control-you’ve never been in control.

But you have a good Father that IS in control. He’s known the beginning and end of your story since before He formed the world.

Faith looks like giving Him your ‘what ifs’ and trusting Him ‘even if’

“ after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. “

1 Peter 5:10

“For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison” 2 Corinthians 4:17

“Though He slay me, yet I will trust in Him”

Job 13:15

#SophieTheBrave #DoMoreForSoph #Godisbigger

Smiles don’t mean it’s not there

Somedays we smile.

Somedays we are productive.

Somedays we have fun.

Somedays we relax and do stuff for us.

Somedays we are happy.

But.

Everyday we miss her.

Everyday it’s there.

Everyday we wish she was here.

Everyday the hole is felt.

Days turn into weeks and months and eventually years will pass but, the ache won’t.

Smiles don’t mean it’s not there.

She’s still gone.

We didn’t forget.

We won’t forget.

We still feel it.

We will always feel it.

We need to know you feel it too-that you haven’t forgotten. I think the people in our day-to-day lives don’t want to make us sad by bringing it up. They want to protect us and let us feel like at least life with them is ‘normal’. I’d rather cry because we talked about her than cry because I feel lonely or forgotten. I wish everyone knew that it means so much when you acknowledge that even though your life is ‘normal’, you know ours is still blown apart. So when we’re together, it’s ok to mention her…it’s ok to check in with us. It’s ok to let things not be normal with us around. You won’t make us sad. You’ll remind us she mattered and you love her and us.

We haven’t forgotten. Please, don’t forget.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser

We are all like a Toddler on Steroids

I remember this night so clearly.

One year ago, we were 6 days into what would become a 24 day stay in the hospital. Sophie was in the very middle of ROID RAGE central. She was finishing a round of steroids, getting sedated weekly for spinal taps & spinal chemo, and feeling generally like crud.

Fever had put us back in the hospital after being home for only 2 weeks. For cancer kids, anything above 100.3 requires an ER visit, isolation, immediate antibiotics, blood draws, urine cultures, and usually a hospital stay. It also never fails that when you’re in the ER, the cancer floor is full so you have to wait hours for a bed to open up. It’s not fun.

In this case Sophie’s immune system was at 0 and we had to get to at least 400 to be able to go home. Sounds easy right? Except for the fact that she was getting chemo daily that would keep that number at 0 for at least 2 weeks. We knew we were in for a long stay and we were making the best of it. Stickers, movies, toys, coloring books, play doh, bubbles, books…we had it all. But this night was so frustrating.

We were so incredibly blessed with so much help throughout Sophie’s illness. For our first 5 week stay in Dallas, Jonathan and I never left to go home-not once. This time, it was a ‘routine’ expected stay, Jonathan really needed to go to work, I was on summer break, and my sister and mom were available to help anytime. So for the first time, I had been at the hospital alone for a few days.

Being a full time care giver to a toddler who doesn’t understand what’s happening to her is hard. Caring for that same toddler who is pumped full of steroids that make her constantly ravenous, incredibly cranky, and essentially bipolar is hard. She was so chunky that smiling was hard on her cheeks and we had to go up a size in diapers. When the same toddler has fever and can’t leave the room to go for walks or play in the playroom until she’s 24 hours fever free is hard. And doing all of that alone in a hospital because your toddler has cancer….is hard.

Sophie was over it and over me on this night. She was sick of being poked and messed with. She was sick of being stuck in her room. She was sick of me. For two days solid the only words she spoke to me were No Mama, Stop, No Touch It, Go Away, Let Go…..and she kept banishing me to the couch only to ask me to hold her two minutes later. I was in tears a lot with frustration. I’d escape to take a quick walk while she slept. Sometimes I just stepped outside and sat on the floor outside of our door to just breathe.

That’s what I was doing when Aunt Jacy got there to give me a much needed break. I didn’t want to leave and go to Ronald McDonald because she had a spinal tap early the next morning. But just having Jacy there so I could leave the 6th floor was huge. I was able to go get some food, eat alone, call Jonathan, sit in the chapel for a bit, and just take a long walk outside. By the time I got back-Sophie was sick of Aunt Jacy and wanted me again. Steroids y’all-they’re no joke.

So at midnight, when it’s been 24 hours since fever, and the steroid raging toddler is still awake…..you escape the room and go for a walk. The first walk in 3 days.

And it was glorious.

She was so sassy and demanded her purse, paci, Crocs, Raffe, and her sunglasses. She took off, swinging that right arm like she meant business. She’d get too far ahead of us and stop to turn around and instruct us to hurry up. She knew that even though she didn’t like us right then, she needed us because we were pushing the IV pole. It was hilarious and Jacy and I had to keep making a straight face because our laughter made Sophie mad. The walk tired her out so of course, by the time we got ALL the way down to the end of the 6th floor, she turned and said ‘Hold me mama’.

And just like that-my frustration was gone and my heart was mush. I picked up my chunky baby and carried her back to the room where she slept all night on my chest.

I was reminded that night how similar we all are to the steroid toddler. We rage against God because things aren’t going like they should. We feel ‘stuck in the hospital room’ unable to do what we want when we want it. We say No, Stop it, let go, and go away and inevitably, when we leave that isolated room, we take off on our own with our purse and sunglasses. But when we get too far ahead, the IV pole pulls our arm and we have to stop and look to the one who is holding the pole. The one who enables us to keep walking. The one who picks us up when we’re too tired to keep walking. The one who carries us back to our room and let’s us rest in His arms.

Life is hard. It’s all hard. But He’s good and He’s holding you even when you’re acting like a toddler on steroids.

#SophieTheBrave #DoMoreForSoph #Godisstillbigger #ChildhoodCancerAwareness

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

**************

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.