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.







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.









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,



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.



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,



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.



Dear Jakey,

Onwards through the fog. I woke up this morning thinking about that phrase. And I tried to remember when I first heard it or started saying it. It makes me think that it was a lifetime ago, maybe back when I was 20 and first started working at Zoland Books. I’m not really sure but I feel like that was a quote or statement from another small press we used to work with. Who really knows? I certainly don’t remember. All I know is I woke up with that thought in my mind and how perfect it is.

It seems that several times a year I reach a true fog. It’s impossible to really put into words and it is impossible to expect anyone to understand. And your birthday this year was tough, tougher than I expected (although maybe I think that every year). So we got away and had a beautiful three days in Lake Placid. We knew you approved when Daddy saw the cardinal bright and early Saturday morning outside our room. And it’s impossible not to think of you approving when you seem so present. When we can walk by the beach where I sat with you and the restaurants we brought you. And the parking lot where Kir and I thought the volvo got stolen when you and Ethan and Ollie were all small.

But no matter how lovely our time was, your actual birthday is hard. There is no way to not feel the void and to not feel like it is all wrong. Like somehow I got the short end of the stick and I don’t understand why. We bought a basketball hoop for outside. Last year we bought the xbox. My hope being that a family birthday gift on your behalf will keep the day lighter or more positive but it all remains the same. Hard.

At some point yesterday though, sitting on the baseball field, watching Ethan play and chatting with Johanna and being out among the world again I felt a weight lift. And I was grateful for all the time we had together and for the lessons you taught about bravery and not quitting. I can’t quit on this life because I am sad. And today I am a little better. I have more JHFH work to do to get ready for our Board of Directors meeting. I have our event to wrap up.  I have a delivery to look forward to on Friday and Daddy’s birthday on Thursday. Good things are happening here Jakey, I just wish you were here with us.

Enjoy being 9.

With love,



Dear Jakey,

Wow, I did it again. I let an absurd amount of time go by between letters and I have been procrastinating this one for too long. So much has happened that I wanted to tell you about. So many things: happy and sad yet I never made the time. I don’t know why I let that happen but I do. And now I am annoyed because it seems I only reach out to you when things are the hardest and that doesn’t seem so fair to you. Last time I wrote was in December when we were struggling with 4 years without you. And now I am writing as we enter the other crappy stretch. Sometimes it seems like this time of year is even worse than December. To think that you are turning 9 in a few weeks blows my mind. It is so hard for me to picture you at 9. I remember Ethan turning 9 and thinking about it being his last single digit birthday. This is yours coming up but the milestone is sad, not exciting. And the JHFH event is 12 days away. And it is the 5th one. And all I can really think about is that it is the beginning of another landmark – 5 years without you. It makes me so sad to think about what that really represents – all that has happened in 5 years. I keep thinking about the day you died, before I knew it would be the day you died. When I was just hanging on the couch with you and that was enough. Those were my days. Heath stopped by to visit me and you but you were enough to fill my days. Now my days are filled with so much other stuff and I really just miss the days with you so much. I would give absolutely anything to go back to that.

And I wonder when the pissed off part of all this will go away. The part that creeps up around this time each year. The frustration with others. With friends complaining about their issues – which as real as they are, still manage to upset me. Because I would give a lot to have those struggles with you. To have the luxury of worrying about the things that they worry about. And then I feel bad because maybe I should worry about those things everyone worries about with Ethan but I mostly don’t. Because nothing is really that big a deal. Nothing really is as important as you think when it can all just change so quickly.

And I think about people in the beginning of this struggle with loss. And sometimes I think I can help and other times I don’t. I remember how important it was for me to know I wasn’t alone struggling with loss but I also know that no one can feel your pain in the way you do. And that when people presume that they can it sometimes makes it so much worse. We had losses this year – we lost Ashlyn just a few weeks ago. She was a fighter like you and I suspect you and her have found a way to connect in Heaven. At least I like to think that you have. Similar to you, she was dealt a tough hand in life with an extraordinary amount for her poor body to handle. She fought it well though and I am grateful that JHFH was able to support her and get to know her and her family. Knowing them as helped me as much as it helped them I think.

Mrs. Billok also passed away. You never met her here but I know you have since met her. It gives me comfort in my own selfish way that she is in Heaven too. She undoubtedly is taking care of you in a way that only a mom can and that makes me feel better. I just think of her family still here and how hard this journey remains.

I don’t know how to make sense of it still. I think of all the things I say about how the work we do with JHFH helps and how keeping your memory alive is so important. And it is all true but at the end of the day it doesn’t really feel like it’s enough. I just want to be getting ready for your last birthday in single digits. Not working on a JHFH fundraiser or thinking about how to celebrate your birthday without you or thinking about the Jake Alexander Memorial Scholarship. I just want for one second to be a normal mom with a soon to be 9-year-old boy on Earth.

I miss you so very much.



4 years

Dear Jakey,

So today’s the day. A pit in my stomach arrives at some point before this day comes. And then the day comes and for the last four years we have spent this time away. The first year we went to Lake Placid and the following years we have come to Montreal where we are now. Both places are so wrapped in you that they both feel right. Today I took myself for a run. I really didn’t want to but I wanted some alone time with you and I figured that might be the best way to do it. I ran past the Embassy where we always stayed with you. I ran by Notre Dame and by the Science Museum and by the street with the Italian restaurant we took you too. And by the steak restaurant we had take-out from while watching the Derby for your 4th birthday. And by the waterfront where you and I would sit while Daddy and Ethan played catch or tried to get some kites to fly. I love the memories and the moments.  And I loved that when I wanted to quit you kept me running in the morning’s blistery cold.

I always think that this day is the day to get through and then it will be better. But it really is just the beginning, at least this year. This night is worse than the day. I feel like as I write this is just about the time you left us. And I feel like am on the outside looking in of the entire night from when I yelled to Ethan to call 911 all the way through when they told us you were gone. And everything in between – watching them work on you, seeing the priest come in and just you lying there. And those are the pictures that came up on time hop today. And I wonder why I took pictures. I think because I didn’t believe it was real.

But we have some tough days left – the memories of spending the days and nights at Tunison. And getting used to that and thinking that was okay – that we could hang out with you still. And then having to bury you. And that might have been the absolute worst moment of all. I still don’t know how I walked away and left you there.

We leave Montreal in the morning and will be back in Saratoga and real life. Ethan to school, Daddy to work and I hope the Mardi Gras invites will arrive on time.  We have our Make A Difference Event at Vapor tomorrow night and I will speak a few words about you. It keeps us all going. And we keep busy. And life keeps us going. But it still sucks always, and especially these days. These days its hard not to be consumed by it all.

I miss you and can’t wait to see you again,


Blurred Lines

Dear Jakey,

As we quickly approach December 8th I find myself more and more in a daze. The line between happy and sad, between productive and not, between angry and weepy, silly and mopey is all so grey. Blurred Lines. When I was out today I heard that song which is about an entirely different type of blurred line and I don’t particularly like it, yet it put that phrase in my head. And I couldn’t stop thinking about it all day. It just seemed to fit.

A week ago or so I felt different. I was lost in good memories. Lost in remembering those amazing days and weeks before you died. When you seemed so awake and when you had so many good days. When you cried and whimpered instead of being numb from all the meds. When you rode the fire truck with Xavier. Even when you broke your femur, you had such strength. I remember the letter I wrote you after our day at MGH when Dr. Grottkau cast you. It was our family love story and that is one of the things I miss the most – the way we (the three of us left on Earth) could surround you and do the right thing for you when you needed us to. And how integral a part of it Ethan was in your care. And I worry that sometimes he forgets that – that the memories for him aren’t as clear as they are for me and Daddy.

Speaking of Ethan, he did his black belt test. I know you know it because nothing made me happier (and Ethan too) than seeing the cardinal at the grave that morning. It’s almost like I could breathe again. And it felt like you were sending him your support. And then when we left Saturday night after he had his belt ceremony and dinner we all saw the decorative cardinal sitting outside Massage at Saratoga. Ethan actually thought I put it there for him. And I think Daddy did too. Apparently they think I am a little crazier than I am. Anyways, to me it’s just another clear sign that you are here with us. And while that makes it easier, it’s still not enough. Especially today. Today I just want you back more than ever. And I want to simultaneously stop time AND make it move faster. Another blurred line.

I miss you so much buddy. I keep trying to picture you as an 8-year-old boy and the image doesn’t stick. I don’t really have one. I have the pictures from my dreams but it’s just not enough. At least not today.



%d bloggers like this: