Tag Archives: avm

Weary

16 Sep

alexandme

Alex (and I) left the hospital a little over a week ago and it’s been so good to be home. He’s been getting better at hyper speed and it’s been amazing to watch and honestly, pretty miraculous. He still has some work to do but his recovery has been phenomenal and I am beyond grateful. The Monday after we came home I had my appointment with my oncologist and just like that, I was back into my ongoing cancer journey.hospital

This past weekend Alex spent some time at his dads and it was the first time since the stroke that I wasn’t around him. It made me a little anxious to be away from him but gave me time to sit and digest everything that had happened over the past month and a half. I’m tired, but more than that, I’m exhausted and soul-weary; physically, mentally, and spiritually. Over the past 10 years I have fought and beat cancer 3 times and am now fighting for the 4th time, Stage 4 metastatic…then Alex has a stroke. That doesn’t even include divorce from a (still) difficult ex, remarriage, step-kids, new jobs, moving, sending kids off to college and all the daily obstacles ‘normal’ life brings. I. Am. Tired. I picked up a couple of my old journals, one from almost 20 years ago and one just 5 years ago and both were filled with so many struggles but all my entries ended with ‘thank you for…’ I have never asked God why I got/have cancer, I did ask why Alex had a stroke, and I have asked why life just can’t be easy for awhile because there always seems to be something, and that something has felt enormous (cancer, stroke). God didn’t promise easy. If you’re familiar with the Bible at all, NONE of those stories point to easy. But still…

‘The world breaks everyone, and afterward, some are strong at the broken places.’~
– Ernest Hemingway

When I was first diagnosed with cancer 10 years ago, there was a time when my prognosis was not great, and while I was praying one night I audibly heard God say ‘trust.’ Maybe it was in my head, but it was an interrupted thought and just the word ‘trust.’ Since then, that has been my mantra, trust Him. I am not questioning my faith because man, without faith in these trials I would be flailing. In fact, I believe I can still stand strong because I am trusting God to hold me up. I am not alone in this crazy thing called life. I do feel at this moment like my soul needs refreshment. It feels heavy, sometimes sad, and honestly it feels harder right now to find a thank you because I’m just tired; tired for my child, tired of fighting cancer. Matthew 11:28-30 ‘Come to me all who are weary and burdened, and I will give you rest.’ I am craving that rest, not just sleep, soul rest and refreshment. Psalm 71:14 ‘But I will hope continually and will praise you yet more and more.’ Small steps, Big God.

alex homeIt was a tough 6 weeks. What sustained me and gave me energy? Love. Love is a superpower; love beyond any words, love that took action. My fierce momma bear love gave me the energy I needed to take care of Alex and to be there fully for him. The crazy love I received from my home team: my husband, kids, parents, friends, Alex’s friends and teachers, the parents of Alex’s friends, etc, helped sustained my spirit and kept me secure that yes, the world at home and around me were also taken cared of. The love Alex and I felt from the nurses, staff, work friends, acquaintances, and even wishes from social media strangers was incredible. Love does make the world go round and life always moves forward. ‘It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done.’~Vincent Van Gogh

 

Courage

28 Aug

alex

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

 

Is God Still Good

16 Aug

img_4179About a month ago I was scrolling through social media and one of the cancer survivor/fighters I follow had her first scan one year after being told she was cancer free, and it was still clean. This of course is reason to celebrate and her comment was ‘God is so good.’ I hate to say it, but in my mind I thought, What if the scan results did not turn out that way…would she have still said, ‘God is so good’?

I have had a beyond crazy couple of weeks. About 2 weeks ago I was part of a celebration called Brushes With img_4060Cancer. I was matched with an artist (singer) and we collaborated together to create a piece of music with spoken word. There were several other artist/cancer thriver collaborations and the night was beautiful. At the end of the night I was presented a painting from an artist who told me he was inspired by my story and the painting he had been working on that evening was meant for me. Cue the tears of joy, gratitude, awe, etc. I left on a high. God is good. The very next day my 16 year old son suffered a stroke. The very. next. day.

Two weeks ago today, my son suffered a stroke due to AVM, an undetected malformation in the brain from birth. The tears of joy the night before turned into tears of the greatest sorrow and desperation I have ever had. I have never felt such depths of grief until I saw my baby, right side paralyzed, unable to speak that first week, with so much fear in his eyes. Was God still good? I obviously have had my fair share of bad stuff, but that first week (last week) felt like I was in an alternate reality. The words, ‘God only gives you what you can handle,’ meant (means) nothing to me because this, I couldn’t handle. Then there’s, ‘Things happen for a reason,’…what reason? Why do I have Stage 4 cancer and why would my youngest have a stroke? Here’s what I think (and excuse my language), shit happens. It just does. We were not promised heaven on earth or some euphoric life. I live in Michigan, we have long, gray winters, Michigan is not heaven. This is real life.

When Jesus was on earth, He experienced real life too. God doesn’t give us what we can handle, what kind of God would punish us to see what we could handle? I have felt completely helpless in this situation and I can’t handle this on my own, so on the contrary, I believe God helps us handle what we’re given. Ann Voskamp writes, ‘The Writer of the story has written Himself into the hardest places of yours and is softening the edges of everything with redeeming grace.’ I like that, He is softening the edges of this nightmare.

God is still good. In the case of a Christian life instead of ‘seeing is believing’, we have to live by ‘believing is seeing’. Romans 8:25 says, ‘But if we hope for what we do not see, we wait for it with patience.’ This situation sucks. Me having cancer sucks. I know for sure though, that believing in God offers me the hope I need to push forward. This hope is the release needed to say, ‘I have no control over the situation and I hand it to You.’ Erwin McManus says, ‘Our ability to endure, persevere, to overcome is fueled by this one seemingly innocuous ingredient called hope.’  So, having metastatic cancer but still stable after 2 years? God is good. Alex progressing and getting better slowly every day? God is good. The hundreds if not thousands of people who have prayed for us over the past couple of weeks? God is good. Jesus living on this earth and suffering real, human, pain to give us hope? God is good. We will all have some adversity and some, even major tragedies which will be 100% awful and make us question everything. For me, the bits of peace and even the smallest rays of hope come from my faith in a big God, no matter the outcome. I am not alone. Small steps, big God. God is good.

%d bloggers like this: