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It drives me absolutely crazy that I don’t know what my future holds, that I can’t have a plan, that I can’t even really hope for anything specific. What is my future going to look like? Am I going to be a caregiver for a long long time? Am I going to face even more pain and loss? Can I even focus on me and have dreams and hopes of my own or does that overfill my plate too much and take away from the most important job I have right now of being the head of my household? Am I to be still in this season? I don’t think so. I’ve been still for so long. Am I to step out and do more? I think so. How is that even possible? That’s the part I take day to day.
Yesterday was a wild day and I had evening plans to do the live streaming for church. Mike kept wandering off away from the house. I was in the bathroom for a few minutes and things got silent so I rushed out just in time to see Caralyn and Mike outside near the lake. He had opened the door for her not realizing you don’t just open a door and let a toddler to run out. As soon as he realized she was leaving he tried to go after her but he is unsteady. Yesterday was a highly anxious and agitated kind of day for Mike. He wasn’t content with anything and repeated a loop of anxious questions all day. “Is my Dad ok? Do we make money? Where’s my wallet? Where are the kids? The baby needs you.” Is what I heard all day. (Caralyn didn’t need me. He was terrified she was going to get hurt even just sitting and watch tv.) Good enjoyable moments at home for him seem to be few and far between.
Kenzie had to go to the doctor yesterday and I left him alone for an hour thinking he’d sleep through it. A neighbor caught him wandering away and went it and took him back into the house.
I want to do so much for others but I try to keep my commitments to people who allow me to be flexible. I work with people who I know I can call and say “I’m sorry, I tried but I just can’t leave my house right now.” For a long time and often still, I let the full plate determine my plans. I see that I can’t fit any more on my plate, so I don’t even try….but when I keep moving forward, sometimes just enough is cleared from my plate for me to fill it with the next thing.
Yesterday was completely insane until the moment I walked out the door. Even 10 minutes before I was like “How is this even going to work?” I just kept moving forward in faith that I’d walk out that door, and it worked. I walked out the door and was only 2 minutes later than I planned.
I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.
Because May is brain tumor/brain cancer awareness month…and because I look back at the last 6 years since diagnosis and say “Look what the Lord has done.”
We aren’t any more worthy than anyone else and I don’t understand why I’ve seen so many amazing people lose their lives here in earth to Glioblastoma and why Mike is alive – I do know many lives have been touched and I knew in 2012 to start my blog so people could follow because I felt that God was going to use our situation for something big. I just felt like there was a bigger picture all along. I accepted the prognosis. I prepared, I planned a funeral, we made sure all affairs were in order. We found peace. I have gone through some lows and have been exhausted too, but 90% of the time in the past 6 years I’ve held strong.
Mike’s surgeon specifically told me not to even bother with a second opinion. That’s a huge part of my memories and a huge part of knowing God was in this from the beginning. I’m a people pleaser and I had to learn to stand up and fight back. To be an advocate for Mike and not accept just whatever I was told. His surgeon was amazing and I know every person we dealt with had a purpose for our lives. But I remember by discharge I already knew I was taking him to Duke and I had kinda asked the surgeon his thoughts on a second opinion at Duke or MD Anderson before starting treatment – he said no, not to even consider it. To contact a local doctor – which by the way, there is no a treatment that will cure GBM – chemo and radiation is just a way to buy some more months of survival. God put us on someone’s heart before Mikes surgery even happened!! She gave me a heads up on GBM and told me about how amazing Duke was before we had a diagnosis, I ALREADY knew that if I heard “GBM” that we were going to Duke for more options. She told me she knew Duke gave her extra precious months with her husband before he passed away. The Brain Tumor Center at Duke gives hope and options sometimes when other doctors don’t. Sometimes they just can’t, but I was told to get there fast (before starting any other treatment) for the best chances of having options.
GBM is a horrible diagnosis. But it wasn’t a death sentence for Mike. Even if he would have died within that first year, GBM brought Mike into a place of eternal life. And not only Mike! So many lives have been led to God through this.
I’m weary. 6 years in and I just am. Mike wasn’t diagnosed yet in May 2012, but the symptoms were there. A man came today to give me an estimate on gutters and he was bold enough to say “God sent me here to your house today to tell you it’s going to be ok. Joy is coming.” I said “Joy comes in the morning.” He said “yes! My mom always told me that.” I told him that I believe that joy always comes in the morning, no matter how dark or how long the darkness. He told me that God wakes him up at 4 every morning. He said he wasn’t a religious person, but that he’s a spiritual person. That took some boldness. He had no idea how I’d receive everything he said.
The funny thing is, when he walked in I was all smiles. He read the sign by the door that says “Start each day with a grateful heart.” And I told him that’s exactly how I start each day. I invited him in and was chipper. When he started talking and telling me it was going to be ok, I cried.
God never intended on me being that strong person in every single situation that I try to pretend to be. God wants to bless who I was intended to be.
Don’t apologize for being who you are intended to be. Don’t feel like you have to be strong, or feel like you have to show emotion. Give yourself less judgement and more compassion. More grace.
We are two months short of Mike’s 6th year past diagnosis. My very first blog post stated “I hope this blog ends up being an awesome testimony of God’s healing and restoration.”
I haven’t posted many updates lately. I’ve been in a place where I just couldn’t see purpose in all of this anymore. I didn’t feel like it was worth it anymore. Not feeling like you have a voice or purpose is an awful feeling. Especially since I’ve always been such a big advocate of HOPE. I reached a place where individually I felt like my life was somewhat hopeless and was being wasted. I didn’t feel like I was living fully anymore, I was simply going through the motions. I didn’t even know what to hope for anymore if I did dare to hope for anything. To put it simply, I’ve just felt like a mess and was hurting a lot.
As I’m typing this, things have changed for the better since the darkest of the days.
I’m trying to figure out what I’m supposed to share, when, how and where. I’m not sure if I should be writing, speaking, etc. But I do know that I’m not going to sit back and let this past 6 years be for nothing. I’m not going to stop believing that there is purpose in this hardship. That I have purpose.
Many have heard 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in your weakness” But I want to back it up to 7 and 8 where Paul speaks of the thorn in his flesh, a messenger of satan, to torment him. Paul pleaded three times with the Lord to take it away from him. How many of us have something that TORMENTS us? I know I have had many things in my life that I BEGGED God to take away. God’s response was not to take it away. God said “My GRACE is SUFFICIENT for you, my power is made perfect in your weakness.” I will be the first to admit that this has been a season of weakness for me. But Grace. My afflictions eclipsed by His glory.
I will never forget sitting in front of my husband’s oncologists office in 2012 wondering what we have done wrong to be facing a terminal cancer diagnosis. Certainly a good Christian would not be diagnosed with cancer. Certainly this is a direct result of sin. I opened my bible app and the verse that day was John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” He never promised that we would have an easy life! He actually TELLS us we WILL have trouble! He DID HOWEVER, promise us GRACE. Grace can get us through all circumstances.
As simple as that sounds, its not always something that feels attainable. I don’t want to mislead anyone into thinking I have this all figured out. Being a caregiver is hard.
God’s grace shows up IN OUR WEAKNESS. IN OUR HURT. IN OUR BROKENNESS. IN OUR IMPERFECTIONS. IN OUR MISTAKES. God’s grace can eclipse all of that!
Grace allows us to still have thankfulness, to still have joy, to still have peace…even in the midst of our hardest days. His grace and forgiveness washes away even our biggest mistakes. Or maybe sometimes Grace just realistically looks like “Hey, I survived today. I had patience today. I had peace today. Well, maybe not even in every moment…but I was those things when I didn’t think I could be.” I think we sometimes have a hard time really comprehending the big picture. For me personally, when I think of Grace….I think of surviving moments that felt helpless. I think of coming up for air when I felt like I was drowning and didn’t have the energy to even tread water. I think of the days I was able to remain calm and patient when everything around me was spiraling out of control.
My husband was a Marine for 21 years. Two years after he retired, a month after our youngest turned 3, he woke up one day severely confused to the point that he could not even function. He had taken Thursday day off work to blow bubbles with our youngest daughter before leaving the next day on a business trip to Japan. He was really confused that morning though. He was looking in the fridge for his socks and said he needed help getting dressed. I knew something was wrong, so I loaded the two of them up and went to the ER. Initially they realized he had no right peripheral vision and they ordered a CT Scan. They found a mass on his brain and ordered an MRI. That night we spoke to a brain surgeon and were told that we were going to stay the night while they got his brain swelling under control and then we should go home and get our affairs in order and prepare for him to have brain surgery the next week. The doctor suspected it was a high grade cancer. To make a long story short, he was diagnosed with Glioblastoma which has a prognosis of a weeks to a few months with no treatment, or maybe about a year WITH treatment. People don’t survive this cancer generally speaking. Less than 4% live to see 5 years past diagnosis.
Mike went on hospice in January 2015. While he was on hospice, our 15 year old became pregnant. That entire situation was a huge lesson for me on grace. How to give it and how to walk in it. In Dec 2015 our grandbaby was born while Mike was still on hospice. After a year and a half on hospice, Mike was removed. He is much like a dementia patient as he struggles with self care and memory. He requires 24 hour supervision and assistance. Through all the struggles, all the stress, all the overwhelming moments, God’s grace has sustained me.
God’s grace is bigger than our mistakes. And have I ever made mistakes.
God’s grace is bigger than our brokenness. And I am the first to admit I’m broken.
God’s grace is bigger than our mess. I am a mess at times. I’ve made messy decisions…I don’t have all this figured out quite yet.
God’s grace is bigger than our PAIN. And let me tell you, I’ve experienced pain this year. All the emotional pain of the last 6 years hit me hard and took me on a downward spiral. I can’t be the only one who has experienced this. Nothing specifically changed on the outside, but on the inside all of a sudden I just felt Raw. Broken. Hopeless.
At my lowest, as God always does, he swooped in and saved me… Again. And I have a feeling He will do this again and again and again.
The Session this week is called “Call it Grace” and those three words are what inspired this entire blog post. Log into Facebook and check us out April 21st at about 7pm Eastern time and hear more about the life saving power of grace.