[HIS] Will not mine

“Those of low estate are but a breath;
those of high estate are a delusion;
in the balances they go up;
they are together lighter than a breath. 
Put no trust in extortion;
set no vain hopes on robbery;
if riches increase, set not your heart on them.

Once God has spoken;
twice have I heard this:
that power belongs to God, 
and that to you, 
O Lord, belongs steadfast love.
For you will render to a man
according to his work.”
Psalm 62:9-12

I think it’s so easy to say -put your faith in God and not man. We say ‘Just trust in the Lord’ when really we are trusting in ourselves and in the culture around us to validate us…even though we love Jesus.

The world tells us…
If we just make enough money…
If our kids go to the right school…
If we can just hit that number on the scale…
If our marriages can look happy…
If people ‘like’ our social media posts…
If we are deemed successful at work…
If our kids are well behaved…
If we have a 401k…
If we go to church…
If we serve at church…
If we just pray…

Then we’ll be happy.

It’s not wrong to want those things. It’s not wrong to want to be comfortable and happy.

But what happens when you put your faith and trust…all of your eggs…in those baskets and then…your kid gets aggressive cancer. Then that cancer mutates in a rare and unforeseen way. All of those things go out the door…and you’re in survival mode.

Your trust can’t be in man. Because man can’t do anything without God. The doctors can’t fix her without Him. All the money in the world can’t fix it. Marriage, work, social media…the world…none of it can fix her. Your sense of ‘control’…the imaginary control that you think you have over your life is gone.

When you’re there…you lean on the Lord in a way that the world could never handle. The world would crumble under the weight of your full body, heart, and soul. The grief and worry. Your prayers and energy. The world can’t handle it-Man can’t handle it-But God can.

Man will always fail you in some way.
The Lord can never and will never fail. His love and goodness endure forever. His Will is far greater than ours. Even when His Will is to heal someone in Heaven than here on earth. His Will, not mine, not man’s, not the world’s…HIS. 

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True Surrender

“But the LORD is the true God; he is the living God and the everlasting King. At his wrath the earth quakes, and the nations cannot endure his indignation. 
Thus shall you say to them: “The gods who did not make the heavens and the earth shall perish from the earth and from under the heavens.” 
It is he who made the earth by his power, who established the world by his wisdom, and by his understanding stretched out the heavens. When he utters his voice, there is a tumult of waters in the heavens, and he makes the mist rise from the ends of the earth. He makes lightning for the rain, and he brings forth the wind from his storehouses. 
Every man is stupid and without knowledge; every goldsmith is put to shame by his idols, for his images are false, and there is no breath in them. 
They are worthless, a work of delusion; at the time of their punishment they shall perish. 
Not like these is he who is the portion of Jacob, for he is the one who formed all things, and Israel is the tribe of his inheritance; the LORD of hosts is his name.”
Jeremiah 10:10-16

Let’s talk idols. An idol is defined as an image or representation of a god used as an object of worship. Anything one values over God in their life. False gods, money, beauty, lust, success, power, fame…all of these are things that our culture worships.

Good things can be idols too if you value them over God. Seeking to make a difference, serving others, self-care…

An idol can also be a person or thing that is greatly admired, loved, or revered. Not a famous person…any person. Your spouse, boss, friends, pastor….your children….if you love and revere them over the Lord, they are an idol. 

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Seeking control over your life can be an idol. So can fear and worry.

It’s really easy being on a public platform, to value the approval of others. Am I saying the right thing? Posting appropriately? Am I being annoying? How many likes did that get?

The world can be your idol. Living your life as if THIS is all there is….

What are you holding onto? What can you give to the Lord or at least ask His help with? What are you valuing more than how HE sees you?

God promises that as we pray and meditate on His Word, the Holy Spirit will so satisfy us in Christ that our idols are destroyed.

Lately I’ve been asking the Lord to help me not let Sophie be an idol in my life. That He will grant my heart the ability to long for HIM more than I long for her. I pray I will seek to share HIS story through hers and that I will just be an obedient vessel writing what He puts on my heart. 

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God is Bigger than Doubt

“I am the Lord, the God of all mankind. Is anything too hard for me?”
Jeremiah 32:27

I’ve re-read this verse so many times today. The Lord’s message to us here is so simple, NOTHING, not.one.thing is too hard for Him. Yet, for some reason we doubt Him all the time. We don’t openly call it doubt because for me personally, I fully believe my God is big and able. I truly believe all that He says He is. But I’d be lying if I said I’ve never doubted who He is.

I’ve asked myself Is the same God of the Bible that performed miraculous things…is that God capable of helping me? Is He big enough for the grief and pain that I feel? Does He see little ole me?

The answers, by the way, are yes. Even when I can’t see it.

Doubt affects us all. The reality is that no one’s faith is ever perfect in this life. It’s part of living here in a broken world full of sin. But, if something isn’t perfect, you know what is possible? Growth and improvement. My faith is not perfect, so it can grow and become stronger.

Doubt is like a gap between our faith and perfect faith. There is nothing Christians cannot doubt. Sometimes we doubt our salvation, God’s love for us, the reliability of Scripture, the existence of God, or the identity of Christ. But Jesus is the bridge for our gap.

It’s easy on this side to think-Is God really big enough to handle my problems along with everyone else’s? Where is God in this?

He is everywhere, always. In all places, at all times, with us all. 

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Sophie The Brave indeed

Courage is defined as strength in the face of pain or grief so it’s entirely appropriate that Beads of Courage are given to children going through medical suffering.

In children’s hospitals across the nation, children get a bead for each different test, surgery, scan, procedure, medication, or hardship they face during their treatments. There are programs for Childhood Cancer and blood disorders, NICU, cardiac conditions, and chronic diseases.

When a child is older, the incredible Child Life Specialists are able to use these beads to explain what is happening to them. They bring their name letters in and let the child start their necklace. It’s an incredible way for kids to have a visual and tactile way to process what is happening to them.

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For younger children, like Sophie, it’s a way for moms, like me, to keep track of what is happening. I am by nature an organized person so these beads were so therapeutic to me. Everyday I wrote down what Sophie went through, charter each thing in her head journal, and then requested the beads from our nurses every 21 days when the journal was full. Then I’d sit-usually late at night while my baby slept-and I spread out her ever growing necklace. I’d dump out the bag of 3 weeks worth of beads and start sorting. I put each color bead in its own pile and then made patterns. Yellow, black, white, rainbow, blue, bumpy…repeat. Green, pink, red, star…repeat. And on and on I’d go until I ran out of beads. Then I’d tie the necklace back together, walk over to Sophie’s bed, and hang it up on her IV pole….A few feet longer than it had been the day before.

I did it every 3 weeks for 7 and a half months. It helped me process what was happening. It told her story. I wanted every single thing she went through documented. It was her testimony. The physical proof of how brave and incredible she was being. I also wanted it to be able to show her one day when she was big enough to understand. These beads were so much more than a necklace.

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In December when we found out Sophie was terminal and we discontinued treatment, I almost stopped keeping track of her beads. I thought, what’s the point? She was dying. I would never be able to show her the beads. I’d never get to sit and tell her what each one meant and how she had overcome all of it. I’d never get the victory picture of her healed and whole, covered in thousands of beads. What was the point?

My mama, Sophie’s Mammy, helped me see that there was still a point. We didn’t know how long she had left but, however long it was…she still was earning those beads. She was still going through one of the hardest things a child could ever go through. Her story still deserved to documented. She knew I’d want that story-the complete story. She knew ‘what’s the point’ was my crushing grief talking.

So for 13 more days, I kept writing down each bead and giving the journals to our nurses. One precious nurse brought them in one night with ‘God is Bigger’ beads for me to add to her necklace.

And on that final day, January 4, 2018, Child life searched the entire hospital for one bead. The last bead. The butterfly.

 

Sophie was sick for 232 days. She has 1,344 beads. Her necklace weighs 3.5 pounds and is 45 feet long when stretched out. She had:

10-heart shaped-PICU

200-yellow-nights spent inpatient

26-red-blood or platelet infusions

116-Black-pokes with needles

181-white-chemo doses

137-rainbow-PT, OT, Respiratory, Speech

21-Acts of Courage

130-bumpy-days spent unable to walk…stuck in her bed

56-light green-X-ray, CT, PET, MRI, ultrasound

81-lime green-days with fever or neutropenia (no immune system)

28-Tortoise-spinal Tap or wound care visit

10-beige-Bone marrow aspiration

3-Orange-PICC placement & removal & port placement

13-magenta-ER visit or ambulance ride

76-purple-antibiotic infusions

35-times under anesthesia

20-aqua-tube placements (NG, G-Tube, Chest Tube, Foley Catheter)

52- grey-dressing changes

5-smiley face-hair loss/growth

5-Star-surgical procedures

125-light blue-mouth care

6-blue-clinic visits

3 fish- an upstream battle

1 Butterfly- flying free

And she earned every…single…one.

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Sophie’s beads tell her story. They tell of her bravery. They tell the excruciating journey or childhood cancer. And while I can’t ever sit with her and tell her about it…I CAN tell the world. I can tell anyone that will listen because, it’s her story, and it matters more than almost anything else in my life.

My Brave baby, I’m so proud to be your mama.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #BeadsofCourage #ChildhoodCancerAwareness #MoreThan4 #GoGold

The world doesn’t care that I’m grieving.

I’ve learned something in the last few days on our trip to Seattle for my sister’s wedding…the world doesn’t care that I’m grieving. My world felt like it stopped on January 4, 2018 when Sophie took her last breath but, it didn’t. Everything else outside of our little corner room on D6 at Children’s Health kept going. The clocks kept ticking, the hospital kept buzzing with activity, traffic still backed up, the sun still set, I kept breathing…and a whole host of other things kept going even though my body was stuck at 2:11 PM.

In the months following her death, I didn’t put myself into situations where i was around strangers much. I stayed in a bubble of people that know and care about me and Sophie. The world still moved on but, my people kept the bulk of change from slapping me in the face. Now, a few more months later, I’ve obviously re-entered the world a bit and am reminded daily that the world doesn’t care that my daughter died. My people care…but now that I’ve ventured outside of my comfort bubble of loved ones…the world is still big, it’s still turning, and it didn’t stop in January.

That became painfully obvious during our travels this week.

Grief does weird things to your brain. I now have, what I call ‘grief induced social anxiety’…I’m not a doctor but, I never had social anxiety or got overwhelmed easily before Sophie got sick. It now hits both Jonathan and myself pretty heavily sometimes…not all the time but, when it hits it’s pretty debilitating. Even with Zoloft on board.

In stressful situations, I get really overwhelmed all of a sudden, my heart pounds, I get really hot, tears tend to start leaking from my eyeballs and it leads to a full on sobfest.

And the world could care less.

On Friday, traffic didn’t care that we had a flight to catch for my sister’s wedding in Seattle. The 6 wrecks we passed had no clue that it had already been a hard week for me and neither did the construction crews that stopped us for almost an hour. The traffic in Seattle and the ferry schedules didn’t care that I was 200% overwhelmed by the time we got in our rent car at 7pm

Seattle time. None of it cared that I was on the verge of a full on panic meltdown. The rain and wet roads didn’t care that I was in tears because I was missing my sister’s rehearsal dinner on top of everything else. The world doesn’t care that I get anxious being away from home because I’m away from the cemetery…away from my girl. Then on our way home, yesterday, Hurricane Michael didn’t care that I was so ready to be away from large crowds and in my home on the couch under blankets. Airport delays didn’t care that the emotional hangover was setting in and I just needed to decompress at home for a bit.

Grief multiplies stress.

Stress multiplies exhaustion.

Exhaustion multiplies grief…..and on it goes, until it passes.

And the world doesn’t care but, Jesus does.

He knows the anxiety.

He knows the stress.

He knows the overwhelmed sense of panic.

He knows the tears.

He knows the grief behind it all.

He knows your heart.

He knows you.

He is the Shepherd that leaves the 99 sheep to find the one that’s lost.

And you know what? It’s already redeemed. Because we decided that driving home from Dallas at 1AM wasn’t safe so we got a hotel. Now, today, after 10 hours of sleep…we are going to visit the hospital and our sweet friend Addie. So yeah, Friday and yesterday’s travels were awful. But we had precious time with my family. My sister married her person in a gorgeous ceremony and we got to take in some incredible scenery.

We are thankful to be safely back in Texas. We are thankful to get to love on our nurses and friends.

So I’m calling that a win.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #AddiesArmy #WorldMentalHealthDay #1in5

Memories of Miracles: 9 months

Everything right now is ‘one year ago’. It’s pretty brutal. And today is no different.

One year ago, Sophie was declared cancer free. She was still extremely disabled and we were facing the terrifying stem cell transplant process but, she was cancer free. I still had such hope and purpose! I was adamant that if we could just beat the cancer then I would Be rehab mom for as long as it took. I wasn’t unrealistic…I knew we had a very, very long road ahead of us.

But, here we are one year later, and she’s been gone for 9 months. 39 weeks. She was born at 38 weeks. So, she’s been gone now longer than I was pregnant with her. And it sucks so much.

Now, one year later, we know that it was an absolute miracle that she went into remission.

You see, we had genetic testing done on Sophie’s tumor and on Jonathan and myself after she died. And we found out that Sophie’s Lymphoma was not hereditary. It wasn’t ‘our fault’. She just had some rogue cells get through her body’s cancer filter (very scientific terms). She also had a genetic tumor mutation that we never could’ve predicted or known about without this autopsy. Sophie had a PTEN gene mutation…there’s a big long definition for that but basically…her body genetically was unable to respond to chemo. Chemo never would’ve saved her.

So, now do you see why remission at all was a miracle?

Even the fact that she responded to chemo from May-August and was her sassy and Brave self was such a miracle. We very seriously, should have lost her in May….or August…but the Lord gave us such precious time caring for her and witnessing her incredible strength.

He has shown me that that little miracle of remission was for a purpose. Because Sophie went into remission, we were sent to Cook’s in Ft. Worth to get ready for transplant. At the time I was so upset about it because that meant leaving our beloved nurses and doctors at Children’s.

But God.

At Cook’s, we were placed on the neurological rehab floor instead of the cancer floor. Soph’s immune system was stable enough that she wasn’t at risk for infection and all of her doctors thought being on the rehab floor for intensive therapy was the best place for her. That floor was less restrictive than the cancer floor. Sophie didn’t have to keep her chest port accessed so I got to have her on my chest all day, everyday. We also could sign her out of the floor and take her on walks. Those were the best parts of our days. We bundled her up in her supportive stroller and explored the gorgeous grounds of Cook’s. Sophie’s favorite place was outside and at Cook’s we got to take her out 2 or 3 times a day. It was also November and December so Christmas decorations were everywhere and Cook’s does Christmas BIG! Getting to take Sophie out in the evenings to see the lights was another highlight of our days.

While we were there, Sophie ‘felt’ better. She was still disabled but, she wasn’t throwing up constantly or in a lot of nerve pain. We had her feedings under control and her medication combinations just right. She was making small progresses in therapy and smiling and laughing. We read books and sang songs, took sweet couch naps, walked laps on the 2nd floor and visited the chapel.

Those 6 weeks were hard because we were in such a limbo of uncertainty. But they were also such a blessing. Knowing what I know now, that her tiny body was genetically unable to beat her cancer…those 6 weeks of remission were such a gift from Jesus. The cuddles and time together….just precious. I will cherish that time forever. Each little memory…every miracle.

And today, we are one month closer to forever.

Tales from the cemetery

I went to the cemetery back in February to take new flowers. When I got there I saw a truck over across the field from me and didn’t think anything of it because……it’s a cemetery.

I sat there talking to my baby and I heard the truck start up and the door shut from behind me. Then, the truck started to come around the little loop thing toward me instead of out the other direction to the exit.

I thought….really?

They’re going to come drive literally next to me instead of go around?

Then I thought well they’re driving really slow so maybe it’s the guy in charge of cleaning up the plots. The truck stopped by my car and this sweet older man rolls his window down. He was precious y’all…..PRECIOUS and he says ‘you ok?’

‘Yes sir, I’m just sitting and talking.”

And he said ‘Well do you mind if I get out and talk with you for a bit?’

I said ‘Not at all.’

I really wanted to just sit and sob on my daughter’s grave alone but, I also didn’t want to be rude to this sweet man.

So he got out and slowly…very slowly made his way over to me and he said he had been ‘over yonder’ visiting his wife and bringing her flowers. I told him how sweet that was and how and I was doing the same thing for my daughter, who had died 5 weeks earlier from cancer. He got big tears in his eyes and said ‘Oh my goodness I’m so sorry! That breaks my heart. Cancer took my wife did too, but she smoked a lot’.

I asked him when she passed and he said October 13, 2014. He goes out to the cemetery once a week to see her. They were married for 57 years and have 5 children. 3 boys and a girl. They were high school sweethearts, he used to walk her home from school and carry her book bag.

Tears streamed down my face behind my sunglasses.

And then….

He pulled something out of his pocket…..it was the program from her funeral….in 2014. He said “Here’s her picture, I carry this with me so she’s always right in my pocket.”

Then asked me to write my name, my husband’s name and Sophie’s name on his wife’s program so he can pray for us.

Tears. So many tears.

Before he left he said “Well I’m here every week so if you see me and you need to talk, you just wave me over!”

I held it together until he had driven off then, I hit my knees and just sobbed my little heart out. Sobbed for my hurt. Sobbed for this sweet man’s hurt. Sobbed for the love of my Father to send that man to me on that day. It’s in the little things that He shows Himself to you. Unexpectedly. Always right when you need it.

And I’m thankful.

#SophieTheBrave #DoMoreForSoph #GodisBigger #OneDayCloser