
This has been one of the toughest weeks in the hospital with my son. As you know from my last blog, my 16 year old suffered a stroke on August 2nd. Since then he went from the ICU to a step down unit, to in patient rehab. He has made TONS of progress in terms of speech and his right side gaining movement, but all of this progress was leading up to 2 procedures to ‘fix’ the AVM in his brain; one to stop the blood flow in that area, followed by brain surgery to fix the actual malformation. What went from deepest sorrow, to joy from getting better, returned to grief and fear this past week for these next two steps. Everyday since last Friday, grief, fear, and joy lived simultaneously in his hospital room. During the day we would experience the joy of something gaining motion but at night, the fear of the upcoming procedures and what changes may happen would steal the joy. Then there were the questions amidst tears in the quiet before bed each night; Why did this happen to me? Why can’t I just be a normal teen? Why me? I didn’t know this momma’s heart could break even more, but watching your child in pain and struggling with these unanswerable questions broke the remainder of what I had left.
How do you answer these questions when you don’t have the answers? How do you remain courageous when you yourself have fear? All I could do was hug him, cry with him and tell him that it was ok to cry, be afraid, and ask questions but in the morning he needed to fight back and to push forward. I told him to ask God to strengthen and sustain him and to give him peace. For a kid (and even for an adult), that sounds so generic and blasé’, but it’s what I have to hang on to so I’m going to hang on to it. I also told him when he’s older, he can tell his kids and grandkids about the scar on his head and how he overcame the biggest challenge of his life when he was just a kid. Ann Voskamp speaks of grief and loss as a type of empty or negative space in our hearts which gives our lives definition; its constant presence in our thoughts and actions. She then says that God uses this space to give us permission to pause, help us reevaluate and draw our attention to what is positive-God Himself and the hope we have.
I am exhausted, mentally and physically. On top of this, we had 3 kids recently go off to college and another is starting her senior year of high school. Life moves forward. I thought that a Stage 4 diagnosis would do me in, but watching and caring for your child through such a major health crisis goes beyond human capability. I understand the being strong and fighting part when it comes to me and my fight, but for my child? It’s the next level. Children believe you when they see in your eyes that you believe, and it has taken every inch of my being, with HEAVY reliance on my faith to be strong and courageous for both of us. Love gives courage. We talk about life in seasons, ‘this is just a good or bad season,’ etc, but I heard Shauna Niequist on a podcast and she referred to life as more of a railroad track, the good and bad happen simultaneously side by side. I agree because I’ve seen it every day we’ve been here and even through my own cancer journey. In this hell, there has been light. On the worst of days, there have been glimmers of hope. There may have been tears but there has been laughter as well; always good and bad side by side.
The love we have experienced from friends, family, nurses, even strangers have meant so much and has lifted us up. I cannot thank you all enough for all the cards, texts, gifts, and prayers. As a Christian, I have always known the story of God and Jesus but now I understand even more the incredible sacrifice; a Father watching his son suffer real human suffering to give us all hope. That is love. Love gives courage.
‘Do not fear for I am with you; do not anxiously look about you, for I am your God. I will strengthen you…I will uphold you.’~Isaiah 41:10
It’s been a rough week and it’s only Wednesday. My scan, which was scheduled for Monday had to be canceled because the insurance company wanted to review my case to decide whether I actually needed a scan or not. This was a bit of a jolt to the system because it takes quite a bit of mental preparation to even get to scan day. As a metastatic cancer fighter who has been getting scans every three months to determine if her tumors are growing, I rely on these scans (maybe too much) to determine how I will live the next 3 months until the next scan. ‘Rely’ may be too strong of a word but knowing if your cancer is progressing is a pretty big deal. I was able to reschedule for 2 days later (today) so I quickly got over the hump of anxiety and disappointment.
The weather here in Michigan is changing. It’s my favorite time of year as the nights get cooler and the leaves change colors. I love fall. Over the past two weeks I’ve been in a little funk because with the changeover to fall my allergies start picking up and along with that and cancer, breathing becomes a little more difficult. I have had trouble breathing here and there since I got cancer the first time 10 years ago because of a paralyzed vocal cord from the first surgery. Now that my cancer is metastatic to my lungs, difficulty breathing is a little more urgent in the doctors’ eyes. Apparently even though my cancer is technically stable, since I have multiple lung nodules, there are possibilities of other things happening simply because my lungs are now compromised. Ugh. Over the past month I have been to the ER because of my breathing issues (all turned out normal besides still having cancer-still stable), and more recently my doctor thought I should go ahead and get a pulmonary function test which was not a party. That turned out pretty much as expected.
I’ve been sad lately because there’s so much I want to do but I understand the facts of responsibility. I’m a wife and mom, I’m an employee, we have medical bills (obviously) and college bills so I can’t just tour the world or start a non-profit and help people. I get it but what can I change? What else can I do? This is why I’m restless. This is why my mind won’t stop. It’s kind of a lonely place to be, even lonelier when you try to pretend all is normal and the same as it always is or was because it’s not. I’m still grateful and I’m still forging ahead like there will be a thousand tomorrows because there could be. Today though, I’m seeking out the color amongst the gray because my heart’s been troubled and I know there’s so much beautiful color. I will soak in this encouragement from Ann Voskamp, ‘I have a Messiah who meets me in it, won’t leave me in it, and will carry me through it! We never cry alone. Go slow. Be God-struck. Grant grace. Live truth. Give thanks. Love well.’

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