This past Sunday was “Gus Day” at our church. One of the things I love about our small town and small country church is the community and how we rally around each other for the hard, but also the celebrations. It truly feels like having a great big family. Everyone wore Gus’s favorite color, Green, and we celebrated his end of treatment by remembering what all he has been through, praising God’s faithfulness and healing of his body, and of course eating – you can’t have a celebration at church without all the good food. Our pastor asked me to speak the week before. I wanted to share the transcript of what I said during the service. Here ya go!
Brian asked me to speak – of course I said yes – talking is my specialty and I love to overcommit, jump in with two feet, and figure it out as I go. So the fact that I was having surgery on Tuesday and agreeing to stand up in church five days later and speak didn’t seem like a bad idea at all. Then I had the surgery, got a bit of a cold, lost my voice, and it snowed in Georgia. A normal person would think this was a bad idea….but it is actually the perfect backdrop and setting for what I prepared.
You know, life rarely goes the way we plan. If you think of it mathematically and scientifically how can it – there are way too many variables when you start to really break things down. But we have to plan, or else nothing would get done and the world would be chaotic. We also think we are in control of our lives, until we realize we aren’t. But thankfully, God is a God of order. Proverbs 16:9 says “A Man’s heart plans his way but the Lord directs his steps” You know, if I had had my way and all MY plans had worked out, I wouldn’t be standing here and neither would Gus. Isaiah 61:1-3 says “The Spirit of the Sovereign Lord is on me, because the Lord has anointed me to proclaim good news to the poor. He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners. to proclaim the year of the Lord’s favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion— to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.”
Gus is my beauty from ashes. In January 2015 I had a miscarriage that lasted weeks – it was awful both physically and emotionally. I ended up having major surgery and was told that if I got pregnant within a year it could kill me. My perfect plan of four kids 2-3 years apart wasn’t going to happen. I also made the mistake of saying “I am NOT going to have a 10-year gap in my kids” And then God chose again, as He had so many times before, to show me that He was in charge (and had a sense of humor). The same week I had convinced myself that I would get my tubes tied and no more children were in my future, those two pink lines showed up. And every major event since that day has tested and strengthened my faith. He was high risk. I was high risk. So many things were working against us that we don’t have time to talk about this morning. He was due on Jack and Eli’s birthday (which is EXACTLY a 10 year gap 😏). He was born on Murphy’s 9 days earlier. God put his stamp on this baby early on. Psalm 139:13-16 says, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”
While I was pregnant with Gus, I found what I was certain was breast cancer. I waited until he was here and healthy and stable before I had it seen about (I don’t recommend this btw). He had a few issues that required surgery in his first few months – then the holidays came and I didn’t want to ruin that – so I finally had it seen about after the new year. That first two weeks of January 2018 I laid face down in my bedroom floor weeping and begging God to not take me away from this baby and this baby from me. It all seemed so cruel, I mean, what possible good could come of this. It wasn’t fair. But God….
Most of you know the majority of my medical history over the past 8 years – I don’t want to focus on that because, it is “Gus Day” but I think we can all agree that my medical chart reads like a soap opera mixed with science fiction mixed with a Shakespearean tragedy. Looking back though, I can see God’s hand in so many of the details and have been able to find purpose in all of the pain. Gus has known the word cancer from day 1. He has seen and endured more in his 8 years than most adults do their entire lives. And once again, if I had had my way – he wouldn’t be who he is, and so many people wouldn’t have had the opportunity to be blessed by knowing him. See, after all of the tragedy and waiting, this was supposed to be MY baby – I wasn’t planning on sharing him – but I was forced to – and he became everybody’s baby. I was trying to think of words to describe Gus and here are a few that came to mind: Bright, Bold, Loving, Giving, Tenderhearted, Resilient ….he is a walking example of the Fruit of the Spirit. From the youngest age, he has always wanted to share – his snacks, his toys, his drawings. You can’t come to our house without him sending you home with a gift of some sort – if he didn’t have one planned ahead of time, he would rush back to his room and draw a quick picture. Gus loves people, and he loves Big.
The day Gus was diagnosed with leukemia was undoubtedly the worst day of my life. We had been trick or treating in Milledgeville that morning with friends, had lunch, and were at my physical therapy appointment when I got the call from our primary care doctor with the results from his bloodwork the day before. I knew that tone. I knew what it meant. “Just read me his numbers and text me the results – I know what this means and I know what to do.” I sprang into action as if on autopilot with my tiny, sugar filled Spiderman in the backseat. I called my BMT doctor, sent him his bloodwork, and asked him to find me the best pediatric oncologist that MCG had. I explained to Gus what was going on and what we were doing. I called Marsh and told him to meet me at home and pack us a bag. My doctor met me at the pediatric ER and when he walked in is when the dam finally broke – I fell into his arms and wept and said “I can’t do this – I can’t do this with him” Those first days and weeks are still a bit of a surreal blur – kind of like some sort of sci-fi movie that doesn’t seem like it could have possibly been real. But even in the midst of this awful, God showed me glimmers of hope and light – his leukemia was NOT AML, and it was “low risk” which is rarely seen. We didn’t have a hashtag, we didn’t come up with a slogan, I didn’t create a FB page for him – no particular reason, just didn’t have the energy for it. So I don’t have the number of lumbar punctures, chemo treatments, hospital stays, etc. memorized or even written down anywhere. But it was a lot. Then mine came back….and, we know what happened after that. Which brings me to the phrase that we have all heard at least 1,956,432 times “I don’t know how you do it”
If I had a dollar for every time I have heard this phrase….. Well, you know how it goes, I’d probably be sitting in a sunroom in a cabin in the mountains watching a creek and gazing on giant rocks while drinking coffee and reading a good book – but folks don’t seem to be handing out dollars along with this platitude. Honestly, I don’t know how I do it either. Most days it doesn’t feel like I’ve done anything right, and I always feel like I am behind and will never get my ducks in a row. I like the meme that talks about not even having ducks, but rather squirrels – that is much more descriptive of me; but even my squirrels have ADHD – just ask my employees, God Bless them for putting up with me! I mean, how DO you respond to this? When it is phrased as a question, it’s such a loaded one, I don’t know the right way to answer. Do you want the polite Southern answer (like we do for the question “how are you doing today?) or would you like me to overshare and take your inquiry literally? I’ll pick door #2 😉 Here are some of my answers:
1) “Know your ‘why'” is a popular thing nowadays – calling us to remember why we have chosen a certain career, organization, or relationship. This is a great place to start because it often provides the motivation needed to keep going when you feel like you are pouring from an empty cup. Or it can help you stay grounded when things are going really well and you loose sight of the real purpose of whatever it is you are involved in. My “why” has never been hard – I have four boys and a husband who need me around to find the missing things, provide IT support, and bake the cookies 😉 I joke, but it’s not hard to be willing to walk over fire barefoot multiple times when it comes to your kids.
2) I didn’t have a choice. Simple as that. I didn’t choose cancer three times. I didn’t choose all the complications. I didn’t choose for my child to have cancer. And I DEFINITELY didn’t choose for all of these things to happen back to back, side by side, and in the middle of raising my kids (not to mention all the other drama my life has attracted during this time that some of you are privy to).
3) Who else is going to do it! Aside from the obvious (no one else can take the treatments and surgeries in my place), most of these tasks that take up my time and energy are not glamorous. I don’t know about you, but I don’t see folks lining up to take my place cooking for four ravenous beasts, all the laundry, data entry for the highly sophisticated level of bookkeeping I do for our businesses, sitting in doctors’ waiting rooms for hours every week, being poked and prodded constantly like a pincushion, all for free. Then there are all the things that other people say they will do, or you have hired them to do, and they fall through, so who is left to pick up the slack? Yep, you get it. It just has to get done and there is no one to do it but you. And when it comes to spending weeks in the hospital and missing out on things because I have to take care of my child – you would have to drag me kicking and screaming to keep me away from doing that job. Truly, that was one of the hardest parts of this past year – being forced to miss some of Gus’s treatments and appointments because of my own. The responsibilities don’t go away just because you are seriously ill – they multiply – and unfortunately, it’s just one of those things that no one else can do for you.
4) Because folks are watching. This past Sunday at Church, the sermon referenced Acts 1:8, “But you will receive power when the Holy Spirit has come on you, and you shall be my witnesses in Jerusalem, in all Judea and Samaria, and to the ends of the earth.” This is what stood out to me in this verse – “you will be my witnesses.” It didn’t say “go and be witnesses” or “you should be witnesses,” it said “you SHALL be…” I looked up the Greek word Paul originally used here, and it was the word “eimi,” which is a future indicative verb – it is a statement of fact, meaning it will happen. We don’t have a choice. When we are Christians, the world is watching – we ARE witnesses of Christ and His Church, whether we want to be or not. When we look at this from the perspective of it being factual that we are responsible for what the world sees of Christ’s Church, it gives a little more motivation to “act right.” In my humble opinion, the evangelical churches in America have lost focus here, and so many times we give Christ and His Church a bad name. We have taken “being a witness” and wrapped it up in neat little packages and programs that can easily be taught en masse and sold in books with pretty covers. We think “being a witness for Christ” is a mutually exclusive task that involves saying certain phrases, asking certain questions, and quoting certain scriptures. We have equated being a member of a local church body with being an active member of the body of Christ. We place our tithe in the plate, we donate to missions, we add to the special offerings, all while we drive right past our neighbors who are hurting and need to see Jesus in a tangible way.
When I was first diagnosed with breast cancer in 2018, Marsh and I had to decide how we were going to handle the boys’ school. I had always homeschooled them. We had been off our routine already since the previous 3 years had consisted of us losing a baby, me having major surgery with some complications, and then having Gus (remember… high-risk pregnancy with lots of doctor’s visits for both of us). We ultimately decided to keep them home and do as much as we could to keep life “normal” for them. One thing I’ve said many times is that “cancer is part of our life, but it isn’t our life, doesn’t define our life, and doesn’t get to be in charge.” Having this perspective early on established a good precedent for what we had no idea was to come over the next 8 years. We didn’t put our life on hold and live in a bubble when it was hard. We have lived our hard out in the wide open, in front of everyone, and it has been because of this that so many have seen God’s hand of grace in abundance through our family.
Don’t get me wrong – none of this is rainbows and butterflies – this is BIG HARD with exponents for each person in our family. But here is the thing – we’re stubborn. “Precocious, tenacious, and forceful are all words that have been used to describe me. I’ve passed these traits along to my boys. Thankfully, Marsh passed along all the traits that balance them out 😉 We are all super competitive – ask Marsh why he doesn’t like to play board games! We don’t give up. We love a challenge. And boy have we had them – but like one of my favorite children’s books says, it has been a case of “we can’t go over it, we can’t go under it, we can’t go around it, so we have to go through it” – the only way out is through. Then you are left with either doing it with a smile on your face and looking for the good, or sinking under the weight of it all. And we aren’t quitters. Besides that, it’s way more fun making light of things and finding things to laugh about rather than moping and giving in to depression.
4) And Lastly, because letting people into our messy just might make a difference.
My unique perspective and experience has given me the opportunity to talk to so many people going through awful things – they are comfortable sharing with me and I am honored that they let me into these sacred spaces of theirs. I could talk all day and share so many amazing stories of what God has done through our family for others going through their own unimaginable, but we would be here all day. So I will just share one from this week…..
I hadn’t told many people that I was having surgery this week – and if I had, I don’t know that I would have gotten the text I got Wednesday evening. Some friends of mine messaged me asking me to reach out to a young woman at their church who is going through aggressive breast cancer. She has a two year old. And she has decided to stop treatment. Her doctors told her she would have around 2 years left if she stops. Here is part of my exchange with her:
Me: ***, again, my heart breaks for you – because I have lived through this so many times in the past 8 years, I know better than to tell you what I think you should do – so I will say what my first oncologist told me “we know what the medicine is supposed to do, now let’s see what God does with it” also “you are not a statistic, you are a child of God and only he can number your days” He would never give me any time estimates for this reason – he prays with me at every appointment. Every single one of my cancers has had a very low survival rate and poor prognosis. I am the queen of the less than 2%. None of this is easy – keeping on going is so hard, but so is stopping, and no one can understand that unless they’ve lived it. I never thought I would hear my youngest child speak – much less get to watch him figure out math and reading and all the things. I can tell you that every one of those days I kept going when I had nothing left in my tank was totally worth it getting to still be here and be part of my kids’ lives. None of this has gone like I hoped for (aside from still being here), but I keep slogging through the muck and keep finding sweet little jewels and blessings I would not have gotten to find if I hadn’t gone through all of this. I have seen so much beauty from ashes. I will tell you what I’ve told so many other patients I’ve talked to – someone has to make up the 2%, why not you? I want to encourage you to keep going – but I also want you to know that if you choose otherwise, I will be in your corner for that too. So much love to you – from someone you’ve never met, but understands.
Her response: This just made me cry. And honestly, gave me the clarity that nobody else has been able to give. I think I may try to keep going. I don’t know how you do it
Me: It is 100% God’s grace, mercy, strength and His people being His hands and feet for me. This is the stuff “I can do all things….” was written for – not professional athletes 😉 When I was first diagnosed, laying prone on my bedroom floor begging God to let me see my babies grow up, I promised him I wouldn’t waste this experience and I wouldn’t hide in a corner. I have lived out loud and in front of everyone this whole time. I’m nothing but a vessel and want Jesus’s love to shine through me – I am honored to be let into these sacred spaces with people. It is truly a privilege. So thank YOU for being someone else that gives purpose to my sufferings.
So Gus, I pray, and I ask all of you to pray with me, that you will continue to live out loud, live boldly, and continue to let God’s love shine through you. You ARE a witness to God’s love, mercy, and grace in our lives – you are such a blessing to me, our family, our community, and everyone you meet. I cannot wait to see what all God has in store for you. He is using you already – continue to look to Him for your strength and keeping finding all the good that hides in all the hard. We are all better people for knowing you and the world is a better place because you are in it. You are the best example to me of why I need to “Trust in the Lord with all my heart and lean not on my own understanding…” (Proverbs 3:5) because God’s way is always the best, even when it doesn’t seem like it in the moment.
Cancermamma 