Update: Mike, The Bros, Life as a Caregiver

As many of you know, instead of finding the relief we were expecting and hoping for from radiation, Mike’s health has continued to go downhill. Watching him struggle is a pain I can’t explain. I’m filling out preschool paperwork for my son and palliative care paperwork for my husband. I’m reading books to my kids about death and grief. There is nothing natural about any of this. I always say this but it really does feel like I’m telling someone else’s story.

It is an absolute privilege to be the one these three boys depend on for comfort. For direction. For survival. It’s a rewarding and purposeful job but it’s also heavy. I fear every single day for my boys should something happen to me. You get married, have kids and have a will drawn up because it’s what you’re supposed to do to be a responsible parent. We were 26 years old and in full blown baby mode. We knew the importance of the decisions we were making but we were also checking items off the pregnancy ‘to-do list’. This whole situation opens your eyes to the fact that bad things can literally happen to anyone at anytime. It’s horrible and it’s unfair but it’s true.

I think in my role as caregiver, I’ve put this impossible pressure and responsibility on myself to save Mike. I really believed I had a chance at saving him from this monster that is brain cancer. I wanted to believe that I had more control. It feels like there is so much more to try but the rate at which things are changing is limiting us. We are in what feels like an impossible situation with a tumor growing in a pattern that excludes us from every clinical trial and growing in a location that cannot be biopsied. Without the biopsy, we can't learn the genetic information needed to access a targeted treatment – like we did the first time. The tumor is extending into the most critical parts of his brain. He took a dose of chemotherapy a few weeks ago to help slow things down but more time will never be enough.

The physical exertion of a caregiver is difficult but it’s the mental overload that really challenges me. It’s the anxiety over what life is going to look like 1 week, 1 month, 1 year from now. It’s the indescribable fear of Dante and Dominic’s future and the pain they will inevitably feel throughout. It’s the bills that need to be paid, the support accessories that Mike needs, the tracking of medications and appointments and the daily messaging with the nursing team. It’s the scheduling of physical therapy, speech therapy, occupational therapy, nursing, wound care and fluids. It’s remembering what food staples we’re out of because if we go *one day* without applesauce or waffles, the boys might chop my arm off. It’s the constant thought of what more could I be doing. It’s dealing with long term disability claims and cobra. It’s the guilt of wondering if all of these administrative tasks are taking too much quality time away from Mike and the boys. Do I have a choice? Did I spend enough 1:1 time with everyone today? It’s moving quickly when Mike has new symptoms that need immediate attention at any hour. It’s the self-control it takes to stay calm when Mike’s in distress but my kids are hanging on my shirt asking me to stop and come play. It's striving to limit screen time but also finding myself in those moments of desperation. It's the middle of the night needs and lack of sleep. It's trying to find the time and resources to help myself process this better. I feel so much sadness but I’m also realizing how little I am actually processing of this whole situation. Things are moving too fast and my mind can’t keep up. I do have so much help at home. I could never ever diminish the level of dependency I have on my dad and my in laws. I need them. We all do. No body would get the level of care and attention they get now if it wasn’t for our family stepping in all day every day.

I've been following a woman named Nora McInerny - an author and podcast host. Nora’s husband died from brain cancer when her son was 2 years old. I first listened to her Ted Talk years ago about grief around the time that my mom died. There are so many feelings that come up throughout this journey and it feels like a process that so few can relate to. Grief is different for everyone. The experience is different for each person even when grieving the very same person. There are so many things I've read and heard in Nora's work that make me feel so validated in what I’ve been feeling over the past 13 months. In one of her podcast interviews, she and her guest talk about how grief actually begins at diagnosis. I never thought about it like that – but it’s absolutely true. I am grateful to still hold Mike’s hand and tell him I love him today, but I realized that I have been grieving since his diagnosis last May. The moment we heard “brain cancer” was the moment my head and heart started feeling the pull between being extremely hopeful but also realizing that life will never be the same. Despite our optimism, the life we imagined together died in that moment. Since Mike’s diagnosis, I’ve been grieving the partnership and companionship this illness robbed us of. I’ve been grieving for our boys and the childhood we envisioned for them. I’ve been grieving our entire family dynamic. I’ve been grieving family dinners together at the table - just the 4 of us. I've been grieving the idea of us ever becoming a family of 5. I’ve been grieving my very own identity while learning my new role as caregiver – which I take on with absolute honor but wouldn’t wish on anyone at 30 years old, or ever. For the last 13 months I’ve tried to fully believe that we will defy all odds and have many, many years ahead of us; but, it would have been unrealistic for me to not simultaneously consider the alternative. I am trying to wrap my head around how I will possibly move forward as our world comes crashing in. I will never lose all hope – but the emotions that come along with this are so complex.

As for the bros… Each night I lay in bed with Dante until he falls asleep. We read a book or two, say a prayer, chit chat, cuddle, and a few minutes later he’s out. We each say a few things that we’re thankful for. Dominic is a firecracker every single waking second. His sheer will to do absolutely anything he shouldn’t be doing all with a big smile on his face keeps us on our toes and laughing throughout the days. He’s too young to have an emotional connection to this, but he has an incredibly sweet heart. When he’s not climbing tables or playing with dog food, he sits with Mike. He touches Mike's face. He pushes the wheelchair and pretends he’s helping us transfer him. He always includes Mike in what’s going on, even though Mike is so limited. The world should take notes from my one-year-old.

Despite how overwhelming and chaotic things can get with two toddlers, they make me see the light. There are so many moments like those I mentioned that I am overcome with joy despite all the heartache. Though I wonder: how can I possibly feel any sort of happiness when our world is so dark? In all of these moments I think: Mike should be a part of this. Every morning before we get out of bed, I say “today is going to be…” to which Dante responds “an AWESOME DAY!” The days are actually hard and exhausting but at the same time, my heart is so full with the boys. Despite how sad I feel, there are still moments that feel awesome. And sometimes, that makes me feel guilty. I remind myself that if Mike could express how he felt, he’d of course want as many awesome moments for us as possible. I am thrilled that despite their obstacles, our boys are such happy, silly little guys.

I know Mike feels the same.

No matter how many thoughts keep me up at night, the one thing I am confident in is that at the end of the day, everyone was very well taken care of and knows they are loved to the moon.