Everything that dies, some day comes back

Dear Jakey,

As with so many of my letters to you, this has been written in my head many times over. I have been grappling with so many different versions and struggling to find the right words for so long. And sometimes I feel like through the podcast I have been talking about you so much (which I love) but that I also find to be a bit emotional and draining. And then sometimes I feel like no one wants to hear a damn thing I have to say.

I have also been talking to you so much in my head lately, I think about you turning 18. And the debate in my head whether you are forever 4 or actually 18. Do you look like Ethan? Are you tall like him, or are you shorter? I think of when you were born – you weighed more than Ethan did at birth but was shorter. I wonder if your build would have stayed the same. I wonder what you are like in heaven. I am not overly religious and become less so each day it seems. Yet I cling to this idea of this other world. This world where you are happy and waiting for us. And I think of you making friends. I think of you welcoming Liv.

Thursday night we went to see Bruce Springsteen at the Dome in Syracuse. I don’t know if you remember that I wrote to you back in 2012 after a Bruce show. I didn’t actually remember it until the show started and I remembered thinking of it as a religious experience. Something about the words of the songs with the music and the connection among the crowd makes me feel close to you. I wasn’t really expecting it to happen again but it did.

At the risk of sounding wacky, I felt you there. And I kind of think I felt Liv there too. Hopefully, you are friends. There are just so many of his words that make me feel like there is more to life than what we have on Earth. Maybe it is because your mom is getting old, but I actually wrote them in my notes app on my phone to have them as a reminder and to not forget.

A few of the gems that get me through:

Grief is the price for loving well.

And though my soul feels like it’s been split at the seams
I’ll see you in my dreams

Everything that dies some days comes back.

I will recite these phrases in my head and use them as mantras to try and stay sane. It is hard to believe you are soon to be 18. I think of when Ethan turned 18 and while not much changed, some things did. And I feel like that is happening with you as well. It is a good time for Daddy and me to figure out our next steps – both boys will be adults (technically!) and it seems like as good of time as any to figure out the future!

Wish us luck!

Love,

Mom

Jakes Hotel

Dear Jakey,

The last few weeks, or maybe month, I have been inundated with thoughts, conversations, and different ideas about grief. I have talked more about you in the last month, and to more people, than I have in the previous few years. It is not that I didn’t talk about you before, because I certainly did at every chance I could, but now it has sort of become my job. And while there have been some moments where all this talk has weighed on me, for the most part, it has given me so much joy. It reminds me of how I felt writing these letters that first year – it feels like what I was meant to be doing.

Sometimes I wonder what you think about all this talk. Like do you get annoyed by it like a typical teenager? Are you wishing I would shut the eff up? Or do you like it? Do you like how hard we work to keep your memory alive? I hope you like it, but I also sometimes picture you as a sort of surly 17-year-old. I picture you like your brother at 17, and then I picture you as you would be if you were still here. I visited with Milana last week and I see how far she has come. I think about what it would be like with you here. I would give everything up to have you back in this life with me.

But instead, we make this life on Earth work without you. Sometimes we make it work better than others. When you first left, we took Ethan to Disney. It seemed like a way to honor you and a way to take you with us to see the world, in a way that we couldn’t when you were here. We still do that, Dad and I. We tackle our bucket list and we keep you close when we do it. We leave next week for New Orleans for Mardi Gras. We rented a house and will be with a bunch of our peeps – and your peeps too. Every one of them knew you. They knew you before you got sick and they knew you after. Something about being with them just makes me feel more myself.

We booked 4 days away in March too, at a place called Jakes Hotel. It is probably a weird reason to pick a place but to me it makes sense. Time will tell if it was a good choice.

With all the love,

Mom

Technology

Dear Jakey,

I found a video today of you on an old digital Canon camera. It was quite an ordeal to get the battery charged so that I could see what was on it and then once I got the camera turned on it took me a while to figure out how to scroll through the pictures and videos. I was on a hunt for videos of you, I know they exist but so much time has passed that the world of technology has changed several times over. It doesn’t help that I am now on the older side of understanding it all, so everything just takes me so much longer than it should. But I also don’t entirely blame myself. Nothing uses the same cords, the older things don’t talk to the newer things, and all things technology are just more complicated than they should be, at least to me.

Anyway, all that to say I finally got the old digital camera to come to life. And it was filled with pictures from your last Halloween. The one where you were a vampire and Ethan was a knight. He loved wheeling you around in your chair and also poking you with his sword. Those pictures continued through the rest of the fall. Up to when you broke your femur and had to be in the red spica cast. And then on to great pictures that I had forgotten all about – the ones with you, Ethan, and Sarena all wearing reindeer antlers. You mostly looked annoyed by them but I also caught a few smiles. We have pictures of decorating the tree, and the house. But then there was nothing until 12/17/10 – when Daddy, Ethan, and I went to the North Pole to see Santa. When we needed to get out of the house, and somehow still be decent parents to Ethan. 9 days after you left us. 4 days after we buried you.

As I continued to scroll and really pay attention to the timeline of what was captured on this camera, I also saw a video, one random video that was in early October. I am not sure why I even took it other than you were looking really cute. You had just had your two front teeth pulled and I always thought that made you look even sweeter. You were looking at me with super big eyes – those eyes where we were always a little worried about what was happening from a neuro point of view – but also eyes that locked into me. And you were making noises and I realized just how long it has been since I heard the sounds of you. Or saw those big brown eyes of yours look up at me.

But I guess that is just how it goes. Time is a thief either way you look at it because part of me feels this same way when I think about your big brother. Yes, I still get to see him quite a bit but he just turned 19 yesterday. 19!?!?! Can you believe it? This is his last year as a teenager. Some days it all just leaves me foggy and today is one of those days.

Until we meet again,

Mom

Back Again

Dear Jakey,

After a 7 year hiatus, I returned to writing to you earlier this month. It was done away from this blog and really gave me a chance to think about all the things that these letters meant to me and why I stopped writing. It was like dipping your toe in the water before you just say fuck it and jump in. Well, now I am back. And something about it feels so good. When I stopped writing it was for a lot of different reasons but a big one was that what started as a way to communicate with you morphed into a way that people gauged (and judged) how I was feeling. And I struggled with having to worry about how people took what I was saying. But now, it is different. Now it is back to you and me. And I have missed it so much.

2023 is very close to coming to an end. For what feels like the first time in a while I am really excited about welcoming in a new year. For the last few years, 2023 was always a big milestone year looming ahead. I was always aware of it and all that it represented in terms of our day-to-day life changing. And then it came and Ethan graduated and went to college. As with most things, the anticipation was different (worse) than the reality. The reality is that as difficult as it was (and is) one door was supposed to close so another one could open. This is the normal circle of life. And now that we are on the other side of it, and that 2024 is just another year without any real dramatic events (other than turning 50 but that is for another time) I feel a sense of calmness entering this year that I haven’t felt in a while.

And while 2024 is the start of yet another year without you (and it is crazy that I have spent so many more years without you than with you), I am embracing all the ways we are doing such good work in your name. For years in the middle, I wanted to separate us from the work. I wanted people to embrace our work because of how good and important it is and not just because they feel bad for Daddy and me. But now, I am more comfortable with how connected it all is. How the work we do is so important but also why we do it is equally important. And you are that why. And I am back to wanting the whole world to know it. At least for today.

Hope you are as excited for 2024 as I am. Miss you more than ever.

Love,

Mom

Saying Goodbye

Dear Jakey,

Here we are again. Quickly approaching December 8th. About three weeks ago, I came to the realization that the next letter I wrote you would be my last one. With that realization came a sense of calm and resolution, yet somehow I couldn’t get myself to sit down and write it. I would write it in my head at 4:00 in the morning when I couldn’t sleep or driving in the car or zoning out while watching football but I couldn’t quite bring myself to sit down and do it. But Ethan just got on the bus and I am sitting in the front room, the room I still call the therapy room even though it’s been close to 6 years since it served that purpose and it seems like now is the right time.

When I close my eyes, I can so vividly remember writing my first letter to you. You were siting next to me on our old couch. What I can’t remember is why I started but I think it had something to do with Hunter and Jill Kelly. I remember when I wrote with you next to me and how it helped me feel so connected to you. And I remember the freedom it gave me and continued to give me for quite some time after you died. And I remember thinking how grateful I was that I sat down that first time to write to you with you next to me because I wouldn’t have had the strength to do it after you died had I not already started.

Somehow along the way though it became something else. Not just a way for me to connect with you but a way to share with others how I was doing. And something in that lost its truth for me. And with that became a different kind of grief and anger and even guilt. Should I write more? Should I write less? And why was I writing if it wasn’t just for you? The truth is that after almost 6 years without you, nothing is easier. Absolutely nothing. And while I used to find solace in the routines created after you died, I don’t anymore. I want to but I don’t. And that’s what got me to thinking that it is time to re-create my routines and my way of communicating. I don’t yet know what that is but I am open to ideas (from you only). I trust that you will show me the way. The way you did with the cardinal. And the way you did when I started writing.

So much of who I am now is because of you. I find comfort in the fact that if you were here you would still 100% know who your mom as. Good and Bad. I know that because of you I have a sense of what is important in life. And while I can get wrapped up in the minutiae like everyone else, I try to really remember what is important and where my truth is. And when I feel like I am going to lose it, I am blessed to have friends that I know only because of you to help. Friends like Milana.

Milana reminds me so very much of you. I remember when I first met her when JHFH first was starting out. She was probably only 2 at the time and so sick. But sick like you were. The horrible unknown rob you of your life kind of sickness. The kind where you get tired of people asking about it and tired of people feeling sorry for you all at the same time. The kind that makes you wonder what the fuck you ever did wrong to make this happen. But also the kind that makes you learn about human spirit and perseverance and dignity. Anyways, Milana is 7 now and she is something amazing. She stands in her stander which is the same as yours. She is on the keto diet, she has osteopenia, she broke her femur, she seizes, she sounds junky but nothing stops her. She smiles and it lights up the room. She smacks at my hand when I try to wipe her nose. She brings me the most joy I have had in a long time and brings back all those feelings I had with you. The feelings of pride, the sense of what it really means to dig deep and plug along and also the feelings of fragility – because it is all so fragile. Every breath is not a given and that fear can be gripping. I can remember with so much clarity when you took your last breath. And when I told Daddy on the phone that I think you died. And just how horrible those moments all were. And I don’t like to go to those moments but I just miss you so much. And I can’t wrap my head around that I’ve had more time here without you than with you. It’s going on 6 years, you should be 10.

But we will keep doing what we do. I will not write anymore at least not letters. But I will find a way to stay connected. Or rather I will follow your lead. You led me to Milana and I trust that you will always lead the way for me. I’ll get through the next few weeks as there is no other choice. I’ll try to not lose focus. And when I do I ask for your help. We have our Cantina day next week and Uncle Steve is coming, we go to Montreal to get out-of-town, we have our last JHFH board meeting and all that comes with that, I have TKD testing (I bet you never thought your mom would keep plugging along and work towards black belt!) and then just like that we’ve made it through.

I love you more than you could ever imagine Jakey. You are the very best part of my life and I wish you were here.

Love,

Mommy

 

 

 

Anticipation

Dear Jakey,

I just logged on for the first time in month to write to you. And the last time I wrote was December 7th, the day before you died. It sort of embarrasses me that this is what my letter writing has become – twice a year, on two of the hardest days. There was so much that happened along the way that I wanted to write but I got stuck. Me being stuck seems to be a recurrent theme over the last five and a half years. Stuck in this world between moving on and enjoying life and this world of suck. But that sounds more depressing than I want it to. Because it really isn’t a total world of suck – it’s just that a loss as catastrophic as the one that happened when you died is just something you don’t recover from. No matter how good I am at faking it.

But this brings me back to us – you and me. I really struggled this past December. At first I thought it was the 5 year anniversary thing but then I noticed that it never got better. Typically once we get back from Montreal and we get around to the holidays I find myself in the upswing. I never really found the upswing in 2016. Part of it has to do with Ethan and his concussion. I’ll tell you about that some later. But most of it has to do (I think) with you turning 10. It’s just gotten under my skin and in the darkest spots of my mind and not left me alone. Not only can I not picture you as 10, I am still surrounded  by you at 4. All the photos are stuck at 4. Your clothes which still hang in Ethan’s closet and in the drawers of the play room. They are all 4. And 10 is so very different. It’s incomprehensible to me. And that is why I have been stuck. Stuck in anticipation.

So many opportunities have lent themselves to me writing to you but I just couldn’t do it until now. I thought I would write when Ethan got hurt. I thought you would understand the fear and the pit in my stomach when I rushed to him and he looked at me and had no idea who I was, when he had no idea what the word “momma” even meant. Or when I was sitting in the MRI room with him and he was in the machine. And when I knew that I would never be strong enough to live through this again. That if anything happened to Ethan my ability to go on would cease to exist. And the fear that comes with that and the ongoing balance I struggle to find in my own head.

And then I thought I would write when I was out with Christianne and about the bartender we had. He was an artist and showed us his work and talked a lot. When he was talking about his art he mentioned that he was trying to live up to his name. His name was Jake. I told him it was a pretty great name and a lot to live up to. And it made me remember when Daddy and I picked the name for you. We wanted a name to be strong and stand alone. Jake was our pick – not Jacob but Jake. And if you were a girl it would have been Jade. Anyways, the whole moment was pretty special and when I went to the bathroom, your Jack Johnson song was on. I didn’t cry but came close. It did make me feel like you were there though. And that things were going to be okay.

And I guess lately what I have realized is what I always used to tell you in the morning after bad nights. Nights of seizures and no sleep for you and nights of fear for me. I would always say that things were better in the light of day. And usually they were. It was the anticipation of what was next in your night and the anticipation that it might lead to something worse that made them so horrible. But once morning hit, it wasn’t so bad. You and I would have our routine and all would be good.

This birthday of yours is like that. I think the anticipation which started in December had the best of me for a long time this year. But I think that you brought me out of it. I think that hearing our Curious George song is a clear way for me to know you are there. And I think that your boldness in staring me down at the cemetery has made even your cranky and miserable mother believe again. Letting me get so close makes me feel so good and I really do believe it’s you when I see the cardinal which luckily has been frequently.

And what really helped me believe again was yesterday. As I stomped through the aisles of AC Moore pissed off and muttering under my breath like a crazy lady because they re-arranged everything and I couldn’t find the two things I needed for the event prep, out of nowhere came our song. Jack Johnson again. And then I turned down an aisle and everything I needed was there.  You are everywhere. And I need it and appreciate it.

And while tomorrow is hard day. It’s really just another day and shouldn’t be any worse than others. I’ll focus on your ridiculously easy birth. And your gentle and amazing manner. And all the good you brought in this world. And I will be grateful that because of you I am a better version of myself.

Happy Birthday my little peanut. Welcome to double digits.

Love,

Mommy

 

 

 

 

Traditions

Dear Jakey,

I have been thinking lately about traditions. We have started so many since you’ve been gone. We come to Montreal every December to spend time and remember you away from the hoopla at home. We spend Christmas in Aruba and your birthday in Lake Placid. We host our Cantina fundraiser around your anniversary in December and the annual fun day around your birthday in May. All these new traditions help us keep going.

We are in Montreal as I write this.In anticipation of tomorrow ~ December 8th. What used to be a normal day is now a day associated with only the worst.  And this year has extra hardship attached to it in that it means you will be gone longer than you were here. 5 years.

This fall we spend a lot of time at home. More time than usual. While tradition isn’t quite the right word, we have definitely traveled a lot more since you’ve been gone – it’s kind of like another new tradition. Sometimes it seems like it’s a bit much, but when we were home all fall it started to feel stifling. And it reminded us all about how important it is for us to get away. Even Ethan began asking when we were going somewhere. It’s like the time away allows us to recharge for being home without you. For being in your home without you. And living with all the memories of everyday life with you.

A few weeks ago was Thanksgiving. Sarena was here and as always, we got the Christmas tree the day after thanksgiving. We went to Bob’s, cut it down and decorated all day Saturday. I got to thinking how long that has been a tradition for me. And how that became a tradition for our family. And it reminded me of one of my most favorite pictures. This was the last time you came to Bob’s with us. And it made me feel better to remember that not all of our traditions are new. Many of them you were a part of and when we keep these traditions sacred we are also keeping you close.

We miss you so much Jakey – each and every day. Especially these next few days when we remember so vividly how much it hurt to lose you.

With so much love,

Mommy

Lost and Found

Dear Jakey,

I still get overwhelmed by the loss in the world. Some days, it seems that no matter where you look people are living in the world of grief. I don’t know the degree to which I noticed it before your death. Of course, I felt the tragedy that others feel when something awful happens, but it was always protected by not really knowing loss in the intimate way I now do. The more time that passes, the more people I know forced to face devastating loss. All the time.

Yesterday, we picked up Sam to bring him to St. Clement’s. Ethan asked him “You know how they say it’s God’s plan? Well then why is God’s plan for all the good people to die?”  It’s so out of character for him to ask these kind of questions that I wasn’t even sure what to say. Although I don’t think it was coincidence that he asked Sam. In his mind they share something unique. It made me realize how deep loss can be and how his life is forever different because he lost you. And he knows so many who also have significant loss. And knows that we talk about it. About Kim. About Sam Calbone. About Michael Hedges.

Your loss has also made me more sensitive than before. When I haven’t seen or heard from people I always go to a bad place and think the worst. It’s a weird space to live in and I manage it well most of the time but sometimes its hard. Ethan and I have been worried about Dennis. We used to see him daily. He too visited his son at Greenridge twice a day. Our schedules were so often the same in the morning. And then nothing for months. And we worried. But today we saw him and we were almost giddy. All of us. And it made me think that when you suffer loss like we have with you, that so many days are unbearably hard. Yet as quickly as they become unbearable they turn around. And today seeing Dennis made some things seem right in our world again.

Love,

Mommy

Secret Fight

Dear Jakey,

I feel a little like we were in a fight. Not really a real fight. More of a secret fight. You remember those don’t you?  The ones I get in with people when I know that it’s mostly me being annoyed by things I shouldn’t be. The ones that are more a “me problem” than a “them problem”. I never thought I would have you be on the receiving end of one but it happened. I think for the last several months I’ve been annoyed. Mostly annoyed that you have been gone. Annoyed that we have crossed the imaginary timeline when you have been away from me longer than you were with me. I can’t fathom that we are approaching 5 years without you in just 42 days.

And then I think you knew I was mad because you pulled back too. It felt like forever since I saw the cardinal. Months really. And I didn’t realize how much I relied on those sightings to get me through. And other people would see you and instead of feeling good about that, it actually ticked me off. And that is when the secret fight started. It was so secret that it wasn’t until the last week or so that I realized I was even in it.

But then things started to change. And I realized that I didn’t need to see the cardinal to have you near me. And that even when I push away or try to pretend life is fine,  the reality is that life without you is impossible. I had many JHFH deliveries set up over a short amount of time this quarter. And each and every one of them was powerful. And in two of them I found myself overwrought because the kids were you. One was so close to how I remember you. And she moved like you and she sounded like you. And I actually had to abruptly leave. It was the first time I had heard some of those sounds in almost 5 years. And it made me sad in a selfish way too. Sad that there is so much different in today’s world that we never got to share. Sad that you never got to try out and upsee to go on walks with us or to pick up Ethan or to go bowling. Or anything.

Another delivery was you at 9. Which is how old you are now. He was dressed so handsome. Kind of how I dressed you. And I missed you so much. And I wonder why we didn’t get to see you grow older. It never gets easier. I am better at keeping the sadness at bay but it is always there. And most times the business of JHFH is my lifesaver but sometimes it is just hard. And I feel like I am in a secret fight with the world.

But as usual you keep me grounded and save me from myself. Monday I picked Ethan up a few minutes early. And walking home before the madness of dismissal, we saw you. You flew in front of us and with no one else in the street we could stop and enjoy it. And it just felt better. We need you near us.

Last night, or really early this morning, you were with me again. I was making that avocado mix that I know you loved (even though Ms. Kelly always wanted to feed you pizza when she saw me making it for you!). And I was making you your meds. I was right back there Jakey. And it crushed me a little bit more because all I really want to be doing now is getting your food and meds together, not writing you this letter.

Love you Always,

Mommy

Foggy

Dear Jakey,

Sometimes I feel like I have it all under control but then it becomes quite clear that I don’t. I have been in a fog since we came back from California and while I first blamed it on jet lag, it has been clear that it is something more. Maybe it was the idea that Sarena has really become such a young lady. I feel like you wouldn’t even recognize her, sometimes I don’t. Seeing her at her school, in her world really struck me. It struck me how time just continues on its way. And life does go on. It is sometimes more than I can handle or process  – the fact that life continues along without you.

I blamed my fog on jet lag but it’s more than that. Ethan finished school and started All Stars again. We’ve had fun summer nights with concerts and visits with friends. We have had nothing to complain about, yet I can’t get out of the fog. It’s almost like in the beginning when I would worry that everyone would forget about you and our life together. And now almost five years later, it seems like a real fear. People have said things (maybe just my interpretation of what they say) where I feel like people have forgotten, where our ability to move forward in life works against us and people don’t realize that today is just as hard (actually harder) than those early days. The more time passes, nothing gets easier. It just gets sadder. It gets sadder for all you have missed here on Earth, it gets sadder because things are so different from when we shared our world. And to some degree, I remain as angry. I wonder why this happened to us? I may hide it better than I did in the beginning but I am not sure it has changed all that much.

I used to think the first times without you were the worst and if I could get through that I would be okay. But then the second year of things without you happened and in ways it was worse. And now this year will mark the fifth year without you. That seems like a lifetime and it is in fact half of Ethan’s life – which will only become more. Soon he will have spent more of his life without you here than he did being our big brother on Earth. It is hard to wrap my head around it.

So Jakey, I ask for your help. I hope this letter helps clear my fog. I hope I get my focus back. I hope I write more because that used to help me feel connected. I love you Jakey. More than you can imagine.

Love,

Mommy