To Charlie, on your 4th birthday

To Charlie on your 4th birthday,

Hey baby, I don’t take birthdays for granted anymore. So, you turning 4 years old is A. Very. Big. Deal! And I still call you baby because I want to keep you little forever. And no matter how big you get, you will forever be momma’s baby. Even if you become a big football player or play in a garage band, you’ll still be my baby.

We’re breathing a little easier these days. Your treatment is complete, your hair is growing back, and you’re slowing coming around to the idea of potty training. And after hanging steady at 34 lbs for all of chemo, you’re growing like a weed and eating us out of house and home.

You are witty and funny. You love to play games- “statues” – freeze tag, musical chairs, hide and seek, and will try to convince everyone to join in the fun. You still hoard everything. You love to collect things. Just this week, while waiting for the big kids to get off the bus, you collected one million acorns from under the big oak tree and wanted to know if I could make you an acorn pie. I love your ingenuity and resourcefulness.

You started pre-k this month and make us play school at home and it gives us a glimpse into your fun times at school.

We made a big move this summer. To Upstate NY. Which you have handled well. Except at bedtime when you ask when we’re going back to our house and it breaks my heart a little and I explain again that this is our new home.

You love, love, love your dad. He is your hero. You’re big and well enough to be rough and tumble with Owen now. And you want Sadie to give you cuddles at night. But you and I are still very much attached at the hip. This past year has bonded us like nothing else. Which is so bittersweet.

None of us know how much time we’re given this side of heaven. But I’m certainly thankful for the time we’ve had, cancer and all. And I’m looking forward to watching you grow and change this year and for all the years to come. You’re little, but you’ve made a big impact already on this world. I know that God has used you, our story, and our small faith to point to Him. But I think there’s more to your story and how God will use you in the future.

Your life verse is Jeremiah 1:5 and it’s written like this in The Message,

“Before I shaped you in the womb,

   I knew all about you.

Before you saw the light of day,

   I had holy plans for you:

A prophet to the nations—

   that’s what I had in mind for you.”

 

I can’t wait to see what plans God has for you, my dear Chubbers. Your momma will be here, cheering you on, loving you and squeezing you tight as long as I have breath in my lungs.

I love you. A lot.

Forever,

Momma

 

One year ago…

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April 24, 2017. It was a typical Monday morning when our world turned upside down. Ben went to work, the kids went to school, and Charlie and I went to the Y. When we got home, he was complaining of pain in his abdomen and it would stop him in his tracks.  I called our pediatrician, who told us to come in. At the doctor’s office they realized that one of his testicles wasn’t where it was supposed to be and gave us instructions to go to the Hasbro ER where most likely Charlie would have a ultrasound and then a small surgery to pull his testicle back down. It wasn’t a life threatening situation, but it’s also not an issue that you want to leave untreated for long.

 

At Hasbro, a woman ER doctor came into our room, Charlie is sitting on my lap, but almost laying down. She immediately puts her hand on his stomach, high up, near his belly button. What I don’t know is that she sees and feels the tumor. The tumor we’ve never seen or noticed.

Charlie and l get wheel chaired over to imaging. He lays down on the table, and the ultrasound tech asks why were there, and I explain that his testicle wasn’t able to be found and we’re hoping the ultrasound will find it so he can have it surgically put back in the right place.

 

And she says, “And we’re looking for a tumor.”

 

And with those words, I knew that our lives were never going to be the same after this ultrasound.

She started the ultrasound, but soon brought in her boss, who sang “The Wheels on the Bus” to Charlie as he looked at this abdomen.  For months afterward, I would hear “Wheels on the bus” and instantly be transported back to that ultrasound room and want to just throw up.

The ultrasound room was very dark, and Charlie was so tired. He fell asleep, with my hands on his face as I sang the only song that brain could remember in that moment, “This Little Light of Mine”.

The ultrasound tech and doctor very gently told me that “Yes, Charlie has a tumor, about 11cm in length”. And I lost it. I sobbed and sobbed in that dark room as Charlie peacefully slept. The kind woman came over and put her arms around me and gave me tissues. I apologized for losing it. I’m the one who always keeps it together, doesn’t cry uncontrollably. I soon came to realize in the coming days, that I am not this person at all.

 

That evening I was still in my gym clothes as we prepared to spend what would be the first of eight nights at Hasbro hospital and Charlie would be diagnosed with rhabdomyosarcoma. A word that I repeatedly had to google before I could commit the spelling and this crazy idea that my baby had cancer to my mind. It was all so dang unfathomable.

 

There is a clear dividing line in our lives: our life before cancer and life now. In many, many ways this has been a hard, dark year. It has been scary and impossibly hard. But we have made it to the other side of this year. Charlie has finished treatment and has no evidence of disease in his body.

I’m no expert on cancer, or suffering, or wading through the hardest year of your life, because honestly there were just a lot of days of simply HANGING ON and just making it through the next five minutes. But I can share with you what helped us make it through:

God.

Faith.

People.

Music.

Food.

Investing in our marriage and our family.

Counseling.

Gifts.

Books.

Organic everything and essential oils.

 

I could write a chapter on each of these subjects, but I’ll just say this: if you’re walking through a hard, dark time, (it doesn’t have to be cancer), and one of these things that helped us jumps out at you as something you want to know more about: message me, call me, text me. Don’t stay stuck in a hard, dark time, I promise you there is more light, love and grace up ahead.

 

April 24, 2018. Today we remember the past, but we trust God with our future. We hold tight to our faith and each other.

To Charlie on your 3rd birthday….

Dear Charlie, 
I thought before you turned three I’d potty train you. 

I thought we’d be working on sharing and picking up toys before you turned three. 

I never ever would have imagined that you would be diagnosed with cancer before you turned three. 

Oh buddy, I can’t write those words without crying. 

But you. 

Chubbers, you have handled cancer like it’s any old thing. 

 You are smart and sassy, you know what you like and are quick to say what you don’t like. 

You have your own special words for things: guys (Minions), living room (the clinic), ice pack (iPad), purple bagels (cinnamon raisin bagels), why not? (When? Why? What?), jello sandwich (peanut butter and jelly sandwich). 
A small part of me wishes that when you get older, you won’t have any memory of this, the hardest year, but a bigger part of me hopes that you remember our love, our bonds. The way our family has come together, the way we all scramble to be with you, to cuddle you, carry you, do whatever you need.

I hope you remember the way you touch people’s lives: doctors, nurses, housekeeping, other families walking this same road- The light of Christ shines in dark places, and you radiate with joy, peace and love. 

I hope you remember the countless ways people have loved on you and our family. People have done little and big things, too many to count, to help you walk through this season. I hope their generosity inspires you to be a person who gives freely and serves others. 

And if by chance, you grow up and forget this season, you can count on your momma to remind you of this road. Because it has been here that we’ve found who we are. We have grown, and stretched and found who we really are when everything is dark and scary. We knew in the light, but we can say without a doubt, that in the dark is where Jesus holds you tight and where faith is all you’ve got to hold onto, because there aren’t promised days, and we’ve found that faith and God are enough. We’ve always known that, but now we know that deep in our bones. He holds. He holds. And we will testify to that truth for all our days. 
Chubbers, momma loves you more than I can say, and it is joy and honor to be your momma in all seasons.

Forever, momma. 

Do small things with great love

If you can’t feed a hundred people, then feed just one. ~ Mother Teresa
 
We all have stuff going on in our lives, and its easy to be overwhelmed by the needs of the devastating flooding in Texas. But there are small things that we can do, and involve our kids in, that can make a difference.
 
I stand behind this church, and they are giving 100% of the donations away. All. Of. It.  And they are on the ground doing the dirty. messy work of being the hands and feet of Jesus. Need more convincing? It’s Beth Moore’s church, where her son in law is the pastor.
One super practical need is underwear. Here is a amazon wish list where you simply select the items to purchase, and they get sent to the organization who will distribute them. This is a great way to involve the kids and have them pick out the underwear for other kids. It is a great time to talk to them about the flooding, how to help people, how to love like Jesus loves, and to giggle a little about underwear. (Maybe that’s just our family:)
If you like clothes that support as well, then this one is for you – 100% of the proceeds through September 15th go directly to the Hurricane Harvey Relief fund.
Maybe we can’t do big things, but we can do small things with great love.

One Day At A Time 

I don’t know if we’ll ever fully grasp that we have a child with cancer. I read someone’s recent update of Charlie (super kind and accurate) and my head read it as if it was another family’s story. And I know when I read stories of kids with cancer or any hard thing, my heart drops and I feel such compassion and tenderness toward a family walking through hard things with their kiddos. 

But we are the family with cancer. And it’s nothing that I could’ve imagined, no matter how compassionate or tender I have been towards other families in the past. I simply didn’t have a clue what THIS would be or feel like. And this is the road we are walking. One. Day. At. A. Time. Because every day brings it’s own challenges and highs and lows. Everyday we are fighting for faith, grace, normalcy, to make sure every member of our family is feeling loved and heard and a myriad of other things too. 

And some days are good. And some days are hard. And some days just knock you flat down. 

I thought we were on our game this week. We have five days of chemo. We made plans, we have tons of help, and we know it’s going to be a long week, but we felt prepared and ready to face this week head on.  

And then we met with radiology. And they told us more of the treatment plan. 

Here’s where I would like to add that in the past I would consider crying in public a weakness. I don’t like crying in public and especially in front of strangers or professionals. Guess where I cry the most now- in public, in front of doctors. And I can’t help it, and I just don’t care anymore. So I cry because 

Chemo + Radiation = A LOT. 

I thought this would get easier to swallow, or my mind would be able to comprehend this diagnosis or just that the treatment wouldn’t make me want to hide in my bed. 

But it’s not getting easier, my mind still has trouble wrapping itself around this thing-cancer, and it’s just harder than I ever imagined. 
So, what do you do when life is so hard? 
You just do the next thing. (My girl Elizabeth Elliot said that, “when life is hard, and you don’t know what to do, you just do the very next thing”. She knew a thing or two about suffering and surviving.)
 I talk A LOT with Ben. And we check in about how we’re feeling and what’s coming and how we’re dealing with it all.  
I tell my people about it. I try to be honest and vulnerable with them about what’s going on and how I’m feeling. And truth: I text because I can’t even speak hard things aloud these days without becoming a sobbing mess.
 I read my Bible. Just this morning God met me at my sticky dining room table, with this verse, “He is your constant source of stability; He abundantly provides safety and great wisdom; He gives all this to those who fear him. (‭Isaiah‬ ‭33‬:‭6‬ NET)
 I journal. A lot. 
 I talk honestly with God and beg Him for a miracle for my baby and listen for His still small voice.  
I listen to worship music. Here’s my Spotify playlist: https://open.spotify.com/user/1274667778/playlist/1zNuf4xUZPsd7Rdzw4YaS1
It’s not a magical formula to make everything better. The truth is, none of it changes a dang thing we’re going through. But it changes me. And gives me strength. 

 And all of it helps us make it through the day. And that’s all I need to do, take each day, as it comes, and walk through it the best I can with God’s grace and provision. 

It is dark, there are more questions than answers, there are many tears, but I can still tell you, God is here and He holds. 

It’s texts like this from dear sister friends that boost my spirits and give me truth and hope. 

“When earths painful, wretched, too much to hear or carry or even process trials happen; sometimes it’s just got to be a fall flat and let Him pick you up and brush you off and nudge you along in the marathon. There’s a goal line a prize awaiting there is a finish line. It is there sweetie. It’s there. Around the bend, up many hills, with sister saints lining the streets praying with hoarse throats and salted smeared faces FOR YOU AND BEN AND CHARLES. We will be hands of Jesus lifting you. Praying. Holding. Cheering. Soulful. Mad and sad and scared BUT most of all hopeful. So hopeful.”   

Red Sea Road 

If I’m honest, the things that I find myself judging other people about are the very things that I dislike in myself. 

Here’s some people I judge: the Israelites. Hello whiny babies, you had food literally dropped from heaven, your clothes never wore out, and yet you took every opportunity to complain, try to worship idols, and the list goes on and on. 

But I’m just like them. I’m a whiny baby. I complain about my “tough” middle class American life, I try to find comfort in every thing imaginable before I find comfort in God. 

Today, I relate to them even more. That time when they were being chased by Pharoah’s army, and they are smack against the shore of the Red Sea. The Red Sea is roughly the size of New York State. Um. It’s looking pretty grim here Moses. And then the Red Sea parts and they walk across on dry land. And they make it safely to the other side while the Sea crashes on Pharaoh’s army. 

Our family is facing our own Red Sea Road. On April 22nd our lives shifted into a new season. Our precious Charlie has stage 3 cancer. Rhabdomyosarcoma. A tumor in his abdomen that will require 40 weeks of chemo treatment. 40. The significance of that number is not lost on me. 
There’s no going back to before the diagnosis. And what’s in front of us is scary and unknown. I have a lot of fears and doubts. There are thoughts that I dare not say out loud because I can hardly bear to think them, let alone speak them. 

But God. Here in the dark, hard season… He is here. He is our strength, our comfort, our song. He gives grace and mercy and strength for each day. We are clinging to Him and His word as we face our Red Sea Road. 

Red Sea Road by Ellie Holcomb

If you were to name one piece of clothing that describes you, what would it be and why?

What article of clothing best describe me? A scarf. For a variety of reasons. One, I love a scarf, its part of my momma uniform for the fall and winter. Skinny jeans, boots, tank top, cardigan and a scarf to complete the look.  This is my “go to look”, its easy to put together and it’s a kid friendly outfit.

Two. I am always cold. Right about the time that the car has reached my comfortable temperature, Ben is reaching to turn the arrow from HOT to COLD because he is in danger of heat exhaustion. Wearing a scarf simply helps keep me warm. Not only cute but scarves are functional as well, who would’ve thought?!


I wanted to show y’all a complete look with a scarf, AND how awkward I am in photos. This photo does both things very well. Ben is looking on in complete amazement at what an big weirdo I am in front of the camera. 

Those are all reasons WHY I like a scarf, but HOW a scarf describes me is that like a scarf I want to be pretty and helpful. Like a scarf helps finish an outfit AND is pretty while doing it. I like that. I also like that scarves keep you warm. Like a hug. I set out a few years ago to stop giving limp hugs. You know the kind, where someone lays their arms on you, but it just feels lame and almost like you shouldn’t have bothered.

I decided that if I’m going to hug you, I’m GOING TO REALLY HUG YOU. I want people to know that with one gesture: I love you, I value you and you are important me. Too much to expect from a hug? I think that if we hugged each other more like we REALLY MEANT IT, we would spend less time wondering if we are loved because we just been hugged by people who REALLY MEAN IT.



Photography: Anna Maling