11 months

I'm writing this on October 4th, but publishing it on October 5th, which is the 11th month anniversary of Zach's passing. It's a very long post, perhaps my longest. We haven't written anything here for over a month, and that's definitely our longest time without a post. But we've been super busy.

So this post contains a few sections. Please skip around as you see fit. If you've been following from the start, you know that when I sit down to share what's inside my head at especially around a milestone, it can get a bit a raw and honest, so you may want to stick around until the end. Or if you don't like that kind of stuff, that's ok too.

Updates - Honoring Zach

I'm not sure I can even cover everything, but I'll give it a shot.

1. Bereavement Retreat - Over labor day weekend, we headed to Maine for a retreat for bereaved families. Thanks to Deana from Rett's Roost for including us. It was a great opportunity to instantly connect with other families that lived through the same hell we did, and came out the other side, all a bit empty, but also stronger. We made new friends, and had a lovely timing sharing Zach and learning about everyone else's journey.

2. Podcast - we did a thing and you can listen to it wherever you get your podcasts. We probably will do more. It was another great way to share Zach's story with the world. (Note that we mention partnering with Rett's Roost for the program we are working on. Since the podcast was recorded, we've agreed that we want to partner with Rett's Roost, but the best path is to deliver that program via an independent structure. I'm being a bit vague, because trust me, we have some really bit news here coming soon....And don't worry, we still love Deana and Rett's Roost).

3. LoveLane Hoedown - A few folks here also joined us for an amazing fundraiser to help Lovelane, the barn that so graciously let Zach ride there a few times. They do amazing work to help children with a range of challenges - physical disabilities, social and emotional issues, complex illnesses. There were tons of celebrity chefs and a great concert by Barenaked Ladies. We had tons of fun and helped Lovelane raise money to fund their riding programs that bring solace, confidence and comfort to some spectacular kids.

   

4. Jimmy Fund Walk - Thanks so much to Cory and Meg for joining us and to so many who donated to our team. Walking in a sea of 7500 people, all devoted to helping make the childhood cancer journey better, all working to raise nearly $8 million is quite an experience. Even though the walk is over, they are still accepting donations, so if you would like to help us honor Zach and help the next child and family, please feel free to donate to our team.
   

   

   

5. Speaking about Zach for the Nexdine Foundation - We were invited by the Palliative Care team (PACT) at Dana-Farber to share a brief story about Zach and our experience working with that team. The PACT team was receiving a donation from the Nexdine Foundation, who was completing their annual charity golf tournament and wanted make sure that all those amazing people knew how important their donations actually are.
   

   Nexdine is a food services and hospitality company with charity at their core. The CEO is the primary driver of the event and their foundation. We honestly had no idea what we were really getting into, besides a few minutes to share our story with about 140 people. But since Nexdine is in the food industry, this was quite the experience - amazing food, and such a supportive crowd. We are so honored to have the chance to help support the Palliative Care team at Dana Farber. I wish we had the picture of the $50k check to share here, but we don’t have it yet. When we get it we'll share it here on or on Facebook or Instagram @belikezach.

Looking back

Over the past few weeks, as one year approaches, I've looked back a lot at precisely what we were doing this time last year. There are two posts I wrote last year, one exactly 364 days ago, and the other 360 days ago.

Make a wish trip to Maine - I thought a lot about this trip as the days ticked by one year later. While the rest and family time was great, the thing that keeps playing over and over in my head is watching have the desire, passion and energy to Zach swim a lap and then cough up a storm as his lungs fought to breathe and he was crawling toward death.

Dream dinner with celebrity chefs - This one hit because it seems our connection with celebrity chefs is growing. Dave Barzigan from Uni graciously supported us and Lovelane by donating his time and food. Ken Oringer donated a dinner at his new restaurant. And at the Jimmy Fund we said hi to Ming Tsai who definitely remembered us and offered his well wishes a year later. And at the Nexdine event, after we finished talking a man in the front row stopped us, and let us know that his daughter lost her battle with Osteosarcoma 8 years ago. We hugged and connected instantly. Turns out that he was chef Bobby Marcotte, who has been on a range of TV shows with Guy Fieri, and makes New Hampshire's best burger.

Inside my Head

Today as I stepped away from desk somehow, oddly, music started playing on my computer. I didn't do anything to start it. And it was the song Broken Coastline, which I wrote about back in May and has become incredibly important to me. I'm not the type of person to really believe in the afterlife or signs, but I've been thinking about this section of this post for a while and knew I was going to write it tonight. Think about that however you want.

They say that the year milestone is hard. They say that the 2nd year gets harder. I don't really know who They are and why they are allowed to have any opinion about my grief. I'm gonna do it my way. (As everyone should.)

I think the year mark is quite frankly just another day. But it is also a significant marker of time. Time where memories may start to fade, or cement in, where relationships have changed. Time to mark how Jenn and I have changed. Time to realize how I think about people and the world is fundamentally different from it was "before."

Inside my head echoes a conversation we had at that bereavement retreat. One family who are now friends shared that their daughter, who passed from DIPG, brain cancer, was perfect in so many ways. Seeing their kids now, you can absolutely see why they say that. Their two kids we met are amazing.

When Jenn and I started to share Zach's story around that table, we let everyone know he was far from perfect. He was flawed, and that, in fact made him perfect. His imperfections, his challenges, all of it made him strong in a uniquely Zach way. That gave him his resilience, his passions, his sense of humor. They gave him his explosive temper. They gave him his openness to share his feelings, give great hugs, and tell people how much he loved them. We are so grateful for our new friends for helping us remember all that made Zach so imperfectly perfect.

And where we are right now, with just 30 days left before the clock rings in a much dreaded anniversary? I'm not really sure, but I can tell you the feelings of loss seem to be growing. The hole in my heart is getting bigger. It's not closing. It's not healing. It won't. Ever. I don't cry as much as I did 11 months, but the feelings are different, and I still get choked up at a memory, a song, or a thought. Frequently.

We know we still have so much support from all of you, but it's different now. What I'm going to say may be a bit off-putting but I just have to say it. It feels like the level of support has changed. Every week I'm in a conversation where someone says something that elicits an internal gasp inside my head. "They just said what? Don’t they know? Don’t they remember?"

I know everyone has great intent, but quite honestly, it feels like many people are forgetting what we went through and forgetting Zach. I doubt that's really true, but I told you I was going to be raw and honest. Whether it's true or not I can't say, but it feels that people forget that my perspective is different from almost everyone else. They forget that their words, that their actions will be dissected by a bereaved father differently than those who haven't come out the other side of this battle without a son, without a legacy beyond what Jenn and I leave behind. They forget that we love to talk about Zach, and we are going to do it whether anyone wants to hear about it or not. It may be weird to some, but we don't honestly care.

My intent in sharing this isn't to burn relationships to the ground. Instead I've promised to be clear and honest, and not have a filter, hopefully sharing my feelings and thoughts in a constructive way. As I write this and think about why I'm writing this I realize this is an odd call for a bit of help.

Now we know we have your support and we've been so busy there hasn't been so much time for communication or social gatherings. Many of you reach out every now and then, some more frequently than others, but I know as November 5th, 2022 approaches we'd love to get as much support as you can give.

I don't know. Maybe I shouldn't have written that. Maybe I shouldn't have invited you inside my head. But I did.

Ok, if you are still here, you may be wondering what's next. Jenn and I have a trip for our 20th anniversary coming up, and then when we get back we are speaking at a Relay for Life at the University of Vermont on the anniversary of Zach's death, November 5th. If you are anywhere near Burlington Vermont then, we'd love to see you. Then we are speaking at a gathering of the leadership for the New Hampshire Lions, who have a charter to fight childhood cancer, on November 19th.

And yeah, there is something else big coming soon.

Keep Moving Forward.