Another month closer and another date dreaded…

It’s been 7 months and 3 days since I held my baby and felt her weight on my chest. I’ve read about amputees that feel phantom pain where their missing limb once was and that’s what grief feels like sometimes. My arms will physically ache to have her weight in them. My chest will feel heavy like she’s asleep on it. My fingers can feel her fuzzy head and soft skin. It’s comforting and agonizing all at once. I miss her more than I think I’d miss an arm or a leg.

This week is a tough week. There have been a lot of tears this week. More than there have been in awhile. I mean there are small tears pretty much daily but…this week has been hard. One year ago this week was the week of relapse. Today, one year ago, we were at home with Sophie for the very last night. On August 8th she was readmitted to the hospital with 16oz of pleural fluid next to her left lung. On the 9th, we found out it was filled with cancer and that our doctors didn’t know what to do next. On the 10th, Sophie crashed during her PET Scan and bone marrow biopsy and ended up intubated, sedated, and tied down with a chest tube in the ICU. Between the 11th-15th she got 15 doses of the chemo while under sedation and intubation that would take her independence away. The rest of the month was spent watching her slowly lose things. First it was standing, then sitting up, then being able to grab things, point her fingers, suck on her pacifier, swallow her spit, turn her head, move her limbs on commands, and her voice…all slowly went away.

It all started one year ago today. The beginning of the end.

You can imagine that’s why I’ve been dreading August. For a cancer family, especially one where you lose your child, it’s not just Birthday, diagnosis day, and death day. It’s all of these other dates that are burned into our brains like a brand. Trust me, I’d love to not remember dates, but I’ve always been a dated person. I’ve always had 3 or 4 calendars and….when Sophie was sick I chronicled everything that happened to her everyday in my notebook. Dates and what happened on them matter to me. But this week? This month? I wish I could forget the significance of these dates.

We did something last week that I’ve wanted to do for months but wasn’t ready for. We had our families send us all of the videos they have of Sophie on their phones. We have both watched every video on our two phones so many times that, we have them memorized. So getting this whole album of ‘new’ videos is such a gift. Many, if not most of them, I’ve never seen so it’s like I’m seeing her…a memory of her that I didn’t have but now I do.

How thankful I am for technology. We have friends that lost their daughter to Leukemia 30 years ago….they don’t have videos and pictures just readily available in the palm of their hands. But we do.

The precious videos of healthy Sophie and pre-relapse Sophie are soothing. They make me smile and fill my heart with joy because she’s just so.dang.cute! Everything she did and said was so cute! But the sick videos? The videos of her trying to talk and trying so hard to control her limbs? The ones where she’s crying in therapy because sitting up with 2 therapists assisting her is so frustrating? Videos of her fuzzy little head and sweet smile as she watches her favorite shows? Those precious noises she made the last few months…those dark brown eyes that I love so much…

Those stab me straight in the heart. I want to pick her up off of the screen and hold her to my chest. Watching them….I just can’t believe that was her life. She was stuck in that bed for 130 days. Disabled, frustrated, and unable to stop anything that was happening to her. I’m so thankful for her life but I just can’t believe that was part of it. But I can’t not watch them…they’re my baby. They’re how she looked and was at the end of her life. They’re my sweet Punkin that I cared and advocated for so fiercely. They’re of the part of my heart that I fought for until we left the hospital on January 4th.

And they’re all I have left. So, I watch them and I laugh and cry and close my eyes listening to her voice. I listen to her and Jonathan call me ‘Mama’. Then I hit my knees on the bedroom floor and sob because it’s so very hard, but comforting too. They are proof that she was real. She happened. She was amazing. She fought like hell. And she was so very loved.

In an effort to help my heart this month, I’m doing an August Scripture Challenge with verses showing that #GodisBigger on Sophie’s Facebook page….I’d love for you to join me as I share my heart and what the Lord is showing me this month. I’d also greatly appreciate prayers as this week and month play out. 💜

“Hear my cry, Oh God, listen to my prayer; from the end of the earth I call to you when my heart is overwhelmed. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy” Psalm 62:1-3

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!

What’s Speaking to Me Wednesday: Ephesians 3:20

Once again, it’s technically Thursday but, I’ve been reading Ephesians 3 throughout the day so, it counts. 

So yesterday was Halloween and I really didn’t think it would matter to me. We haven’t made a big deal out of Halloween for the last 2 years of Sophie’s life so, why would this year be any different? Her first Halloween was spent at home with an ear infection and a ‘1st Halloween’ shirt and last year I think we put her in her Snow White onesie for my school Fall Festival but that was about it. This year, she was hooked up to her Methotrexate (chemo) infusion all day, had therapies, and was sleepy…a pretty standard day here in cancer world. The nurses were all wearing Troll hair wigs which was hilarious and downstairs there was a huge Halloween hoopla that I only know about because our nurse mentioned it. I had a crocheted Princess Poppy wig from Trolls that a sweet friend sent us so, I put it on Soph and snapped a picture just for Halloween posterity. Other than that, it was just another day for us. It wasn’t until I got to Ronald McDonald House yesterday afternoon that the sadness hit me. I felt sad that Soph was missing out on yet another milestone that all the other ‘normal’ kids get to have. I was sad that my Facebook was full of precious babies in costume onesies, toddlers running around as Elsa and Moana, and families at fall festivals and pumpkin patches. My husband even went over to see our nieces and nephew all dressed up before they headed out to Trick-or-Treat. My family was in 3 different places yesterday-Soph at the hospital getting chemo, me at RMH sleeping off exhaustion, and Jonathan at work then home all alone without his girls. 

Just another day. 

I will freely admit that I had a bit of a pity party thinking about what we are missing during all of this and how much I miss my ‘normal’ life with my sweet little family of 3 at home together. I sat in a hot bath tub with a bath bomb and Netflix on the iPad propped up on the top of the toilet by the tub and had a nice cry. That’s a pretty standard spot for me to be if I’m at RMH. After I dried it up and got dressed, I pulled out my little box of index cards that I’ve been writing scriptures on. I eventually want to put my control freak all over it and color coordinate the cards by topic or book of the Bible but, that has yet to happen. For now, I just have 3 sections- blank cards, cards with just the heading, and cards with the full scripture written out. I like to grab one that’s already written on when I’m feeling sad or overwhelmed and it’s usually a good wake up call to lean on Jesus and not myself. So that’s what I did-I grabbed a card and read it. It was:

Ephesians 3:16 -that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being (ESV translation) 

Talk about a wake up call huh? ‘Strengthened with power through his spirit.’ I get chills just reading that. He doesn’t just send us some random help when we ask for it. He’s not sending a third party to help us on his behalf. He send us HIS OWN SPIRIT-part of himself-not just to comfort us in times of need but, to strengthen us with power. That’s the Holy Spirit y’all! The Creator and King of all things on earth and in heaven thinks you are important enough that He sends himself through the Spirit to strengthen you when you need it. Thank you Lord for that. -Just stop reading and say thank you with me here! 

I read that verse, mustered out a tired and weary prayer, took a Benedryl for my sinus headache, then went to sleep with a prison documentary on in the background-I’m weird, I know. So today, I slept in-thank you benedryl- and got myself back up to the hospital to face another day. All morning I had Ephesians on my mind so while Sophie napped today I decided to read the rest of the chapter. All of chapter 3 is great but, verses 14-21 are particularly encouraging. It’s subtitled the ‘Prayer for Spiritual Strength’ for a reason. Verse 20 is what caught my eye the most and what has been speaking to me all evening. Here’s a few of the translations that I really dug into…

Ephesians 3:20- 

-Now to Him who is able to do far more abundantly than all we ask or think according to the power at work within us. (ESV) 

– Now to Him who is able to do immeasurably more than all we ask or think according to his power that is at work within us. (NIV)

-Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. (NLT) 

Basic translation for all of those= GOD IS BIGGER! He’s bigger than anything we could ever ask or even think of asking for. He can do immeasurably more, far more abundantly, and infinitely more. 

Immeasurable. Abundant. Infinite. More. 

Those words all mean great things, big, powerful words. And even those words don’t do justice the full measure of God’s ‘bigness’. That same power that healed the blind and afflicted, multiplied loaves and fishes, and raised Jesus from the dead to sit at the right hand of the Father-that power– is also at work within those that put faith in Him. That power in us- can accomplish the great and mighty works He has set out before us. It can accomplish MORE than we can ask or think of. He’s good. And He is bigger. He’s bigger than cancer. He’s bigger that missing milestones and normalcy. He’s bigger than the worry that plagues our broken human hearts. He’s bigger. We just have to trust in that and have big faith in a Big God.