I committed to being completely honest in my updates from the beginning. So, this is a pretty raw update that I am copying straight from my journal before posting it. However, I want to once again say thank you. Last month, in just 2 days, we raised $118,000, which allows us to afford caregivers for the year. So, thank you for your love, your support, your generosity, and most of all, for being here for it.
Here is my May update, straight from my journal.
May 23, 2023
People ask me all of the time, “how are you doing?” and my typical response is, “I’m great,” which is 100% genuine. Every single Monday, Emmily and I check in with each other, and I’m usually hovering around an 8-8.5/10. And it is true, straight from my soul. Most days, I believe my life is brilliant.
And then I have days like today. And I’m 100% not great. I miss my kids and my wife.
One of the greatest gifts I am able to give my kids is my ability to be present and teach them how to be adults and survive in this world and learn love as they journey their way through it. The good, the bad, and the ugly or as I like to say, the magic, the hurricanes, and the bullshit.
And the fact that I’m still here with them is not lost on me. I still get to go to their events and ceremonies, and I am in the house with them – when they’re home. Turns out teenage boys like to be on the move. At least Zoe Moon is around until she starts wanting to go out. And I love it all. I love watching them get older. And I’m not one who wishes we could go back to when they were young. I have an iCloud in my brain, and I can teleport my way back to thousands of memories. I love watching and seeing how our hard, often good and sometimes awful work as parents is playing out in real life.
When you really think about it, is parenting not just a huge experiment? I don’t know if it’s every generation, but I know it is certainly a staple in my generation, that we are actively looking for what our parents did well and what we want to keep and also recognize where our parents did a shit job that we will not be using. And we’re all just waiting to see how it turns out.
And as I tell Micah, almost 19, you’re a young man and you have strong, deep roots and you have been growing into your wings, the same way you had to grow into your two front teeth. And I tell him, take the best parts of me and live it, and the stuff that didn’t work or you didn’t like, ditch it. We were doing the best we knew how. To which he replied, “yeah, I don’t know what you were thinking by letting me watch ‘The Boys’ at such a young age. I mean I’m glad now, but at the time, that was a terrible parenting decision." (Side note: I’m fascinated with the psychology of it all, as my mom and dad, doing the best they knew how, tightly monitored the stuff we were able to watch as kids). This is our general philosophy on parenting – Roots and Wings. We spend the first 12 years working on developing a strong root system. Then from 12 – 18, we continue working on the root system while also allowing the kids to start developing their wings. So, by 18 they are ready to fly with a deep root system.
And I understand that others have lost these abilities due to death. XXXXXXX doesn’t get this chance with his wife and four kids because life dealt his family a shittier hand than ours. This is not lost on me; I understand what is going on here. That being said, it’s still hard AF because something has been stolen.
The ability to have face-to-face conversations with my kids and walk them through conflict and teach them hard truths with inflection and endearment and emotion... It’s gone. I can’t do it. Conversations take forever, and I’m always having to preface things with, I’m angry so imagine my angry voice or this is going to sound harsh but I’m saying this in my loving voice. It’s exhausting and frustrating. Being a mediator between two of them as I teach them how to handle conflict now takes 5 times longer, and it is excruciating for me, though honestly, it’s undoubtedly good for them because they have to sit quietly with no phone and nothing but their thoughts. Hence another reason I journal. It helps me untangle the headphone wires in my head. Thank Apple for wireless headphones. Squirrel!
And then there is Kris and me. For 17 years, we did life together one way. I would make sure her car always had gas. We would jump in the car and go run errands together or go grab a quick lunch together. We would share the raising of our kids and with 5 kids, we would divide and conquer carpool and baseball and softball and gymnastics and track meets and art shows and everything else. And then there was, of course, our relationship. Dates and snuggling and hugs and sex. And it is gone. Stolen from us. There is no more going out really quick for drinks or easy date nights. There is no more snuggling on the sofa to watch a movie. There are no wilder, drinking, sex games or passionate lovemaking. Gone. Stolen.
And now after 20 years of marriage, we must redefine our relationship. And I’m grateful to be here for it, grateful to be present and grateful to have a relationship to redefine. But the pain is soul-crushing and at times it feels impossible to breathe because I miss what we had, and I am angry and hurt and frustrated and just plain sad. Because it was stolen. And nobody asked us if they could steal it. Life just came in and snatched it. Like a fucking asshole. Gone.
I was semi-prepared for the physical loss. And though it was difficult at the time, now that I have lost everything physically, I think the emotional toll is more difficult than losing the ability to walk or talk or eat or breathe.
So, what now? I guess we reinvent ourselves. I suppose I learn new ways to be a dad and a husband. We learn new ways to love and express love. We walk through the minefield of grief, trying not to get more limbs blown off. I’m not sure we have any other options besides quitting, but I’ve never been a quitter, so fuck that.
And yet despite all of this, I was talking to a friend today, and I mentioned to her this obscure story in the Christian scriptures when Jesus walks up to this sick guy and says, “do you want to be healed?” I always thought, what a stupid question, but today I see the genius in the question. Like any good philosopher or spiritual guide, the question asked is rarely the question. The real question is the question behind the question which in this case is, “do you want to trade your physical health for the things your illness continues to teach you?” And that is a completely different question; yet the same.
If a healing man or woman were to ask me that question, I would probably ask
, “can I have the night to sleep on it and talk to my wife and kids?” Because I don’t know if the tradeoff is worth it.
So, I don’t know. It’s another round of grief. One that I didn’t anticipate. I thought ALS would destroy my body. I did not see how it would wreak havoc on my relationships. But here we are, 37 months in and faced with yet another new and painful challenge.
Life is a beautiful clusterfuck, and love is here.