My Journal of Heartache...and Hope

Our son Max was born on May 4, 2011. Life was busy, happy, and perfect for 37 days. Then, it wasn't.
A look back at our life before Max, with Max, and what comes after...

Wednesday, June 15, 2016

Article on SheKCLifestyle.com

Here is a link to an article that I wrote for a new website co-founded by my beautiful friend, Brooke. The article deals with the fifth "anniversary" of Max's death, the origin and meaning of the phrase "to pull a Max," and the idea that beauty can be found in life, even after horrible tragedy.

While you're on the site, browse through some of the other articles and the boutique. I'm incredibly proud of Brooke and am amazed at the amount of work and passion that she has poured into this endeavor. Brooke is one of the most authentic and kind-hearted people I've ever known; she has been an absolutely crucial and uplifting part of my grief journey. I am so thankful for her presence in my life and for her giving me an opportunity to share my story with her audience.

Here is the article.

Regrets vs "Glad I Did That"

The time of year leading up to Max's birthday and death day are always full of reflection and a whole panoply of emotions for me, but this year felt especially full of those things. May 4 through June 10 is typically a pretty heavy time for me because I am living out Max's entire lifetime during those weeks. It always goes so quickly--too quickly, just like he did. I read something recently that was ripped straight from my own head. Here it is. One thing that especially stood out to me was the idea that "the depth of your grief is equal to the depth of your love." I've been trying to capture that very concept using the perfect combination of words for five years now, and I never succeeded in the way that Cora Neumann did. That equation is probably a mathematician's dream because it is perfect--it's balanced and simple, yet full of significance and depth. And it helps to explain why I am (most of the time, at least) accepting and even welcoming of the overwhelming and crushing sadness and anger that I sometimes feel when I think about Max's death. That sadness and anger is grief, and that grief is my love. I'm okay with feeling whatever I feel because each of those emotions springs from the root of love. I'm not saying that it's fun or easy to get through. Not at all. It's terrifying and frustrating and incredibly difficult, but it also has purpose. Accepting these feelings and not fighting them is me recognizing that there's a little boy named Max who owns a piece of my heart that I'll never have control over. I'm okay with that; it's his, not mine.

This year, I thought a lot about those early days of grief--about regrets over things I wish I would have done and also about things that I'm glad I did do. I'm going to share some of those things so that, hopefully, someone in the future can reduce his or her own list of regrets. Obviously grief is a very personal and very individualized journey, so I'm not saying that this is how to do it right. There is no right or wrong way to grieve. What follows are simply my own reflections on those practical, but so difficult-to-make decisions that demand your attention and timely action in those first few days and weeks following an unexpected death. These are things that I had never given serious thought to and felt so completely overwhelmed by. I was just trying to wrap my head around the fact that my son was dead, but time wouldn't slow down enough for me to get through that phase before it moved on to the next one. The list below is full of things that most of us wouldn't dare suggest to a friend who has just suffered the sudden loss of a loved one. We are usually more focused on saying the "perfect" thing (which, in case you're wondering, doesn't exist, but a simple "I'm so sorry, and I'm thinking of you" is pretty close), and we trust that the family and close friends will help with the rest. If you feel so compelled, then maybe you just pass the list on to a relative or friend who might be able to gently suggest these things without sounding too business-like in the face of tragedy. Many of these things were, in fact, suggested to me by those very people in my life. 

Save a lock of hair--or, in my case, many of them. At the time, I hadn't even thought of this. I don't remember who suggested it--my mom, our incredibly thoughtful funeral director, who knows. I'm thankful to that person, though. Max's hair was one of his defining traits; it was dark, silky, and there was so much of it. At first, this sounded morbid to me. It was hard enough to know that his little body has been subjected to the grotesqueness of an autopsy, and now they wanted to cut his hair? When I saw the little bag containing his hair for this first time, however, it was both a relief and a punch to the gut. It made his death more permanent, but it was also incredibly meaningful to have a piece of him still. I haven't opened that bag often, but I love to see it, especially now that memories of him are not as fresh in my mind as they once were.

Store unlaundered items--We only had a couple of unlaundered items, but someone suggested putting them in an airtight bag. Again, I am incredibly thankful to that person. Every person has his or her own unique smell, and it's hard to place a value on being able to smell it when he or she is gone. I still remember Max's smell, but putting his sleeper up to my nose and having it right there is truly a gift. It's an emotional experience, but it's worth it to have him right there with me, physically, every once in a while. 

Let older children attend the memorial service--This was a tough decision for me, and we ultimately chose not to have Ethan in attendance. We worried that it was too much sadness for his little heart and mind, but I regret that. Grief is sad, so why hide it? Max was Ethan's brother, and he had a right to be there. I am forever disappointed in myself that I took that away from him. I understand and respect that some people may disagree, but I wish that I would have been able to pay closer attention to the doubts that I had when I decided to not let Ethan attend Max's funeral. I guess that the bigger message here is that if you doubt whether something is right or wrong, maybe you should opt for the least permanent choice. In hindsight, I wish I would have brought Ethan and had a designated person there to take him outside if he became upset or need a distraction. I can't go back and even give him a chance to be there now.

Get handprints and footprints--This is another item on my list of regrets. I wasn't even aware that this was an option, but I now know that it would have been allowed. I believe that this is a somewhat common practice for stillborn babies, and I know that the funeral home would have accommodated this wish. Ink, plaster, whatever you can make work, but I would love to have these for Max.

Preserve flowers from the funeral--Our house was absolutely full of flowers after Max's funeral, and they were all so beautiful. Somehow they made the house feel more full of life, and I realized that I didn't want them to die. There was something symbolic about them to me, and dealing with another death (even if it was just the flowers) didn't strike me as fun. For me, the days following the funeral were incredibly difficult. Planning the funeral gave my days purpose, and when it was all over, I was left with this looming, unanswerable question: "What now?" Living a normal life didn't really seem possible yet, and the thought of throwing out all of these flowers that were symbols of people's love for Max seemed daunting. So, I picked a few flowers out of each arrangement and set to work drying them out and preserving them. It gave my days a purpose, albeit a smaller one than planning a funeral, and it made me feel good to be able to save these little tokens of love. It's really a very simple process. I didn't know what I would do with them yet, so when they were done drying, I put them in big baggies and stored them in a closet. When the holiday season came around, I was so relieved to have them. I ended up making centerpieces with the flowers and some Ethan- and mom-decorated river rocks for our tables at Thanksgiving and Christmas. I'll post more about that process in the future. 

Set up a private viewing--I think this is pretty standard procedure, but I almost didn't do it. I wondered whether seeing Max "like that" would replace my memories of him alive with ones of him as just a corpse. My mom ended up convincing me to do this, and, again, I am so thankful. It was an absolutely beautiful experience, and it didn't replace any of my good memories--it actually just added one to the list. Yes, it was emotional. Yes, it was a little traumatic. But, when I walked out of that room, I felt lighter and more peaceful than I had felt since June 9. Instead of talking to Max in my head, I got to talk to him. I caressed him, I kissed him, I fixed his hair one last time, and I told him all of the things I wanted to tell him. If I could go back into that room right now and have a few more moments with Max, I would do it without hesitation. Do not skip this part--its rewards will replace any doubt or squeamishness that you feel. And if you can find it in your heart, give other family members and friends the same opportunity to spend a private moment with their loved one before the burial or cremation. This is still a memory that brings me great happiness.  

Don't make any permanent decisions about your loved one's belongings--For quite a while after Max's death, I was in an impenetrable bubble made of grief. It surrounded me everywhere I went, and it was strong. Not one thing could get through it. This is not the right state of mind to be in when making decisions that you can't take back. When you feel yourself venturing a little further outside of that bubble every day, then go ahead and sort through some belongings. Donate some to charity if you feel like it, or, do what I did--just store everything and decide later. This is what worked for me. It sounds selfish, but I couldn't picture another child wearing any of Max's things, sitting in his swing, using his burp cloths or blankets. And that's okay. They were his, and I still needed him around. I still needed to go into his room and smell him, sit in his chair, look through his clothes. Hell, I didn't even empty out the dirty diaper pail for months. I don't know what I thought I was going to do with a bunch of poopy diapers, but I wasn't ready to throw them away, and that's okay. It was not a pretty experience when we finally did empty it out, but so what? You really have to let your heart dictate the timeline and guide your decisions when it comes to your loved one's belongings. I found that it was a mostly spontaneous process. One day, I would randomly decide that I should pack up Max's onesies, some with the tags still on them. So I did that, and it felt okay because I didn't force it; I just let it come. One day, a few years after Max died, I decided that I would be okay with another baby using his swing. But, it could only be my best friend's baby. Selfish? Maybe. But that's okay. Grief is your journey, so give yourself permission to be selfish as you navigate it.

This is not by any means a complete list of the "practical" decisions that you have to make after your child (or any loved one) dies, but it's a good start. These are the things that stand out to me when I think back to that time in my life when I wanted to just hole up and not make decisions. Unfortunately, that wasn't an option. So, with the help of some very wise and gentle family members and friends, I made the best decisions that I could. When the fog lifted a little bit, I could reflect with a clearer head, and while I did discover some regrets, I forgave myself. I still do forgive myself because I did the best that I could. 

Hopefully someone somewhere will gain something from this list, even if it is just a better understanding of what a mother goes through when her child dies. Please feel free to share this list, and please add to it as you see fit from personal experience.   

Friday, June 10, 2016

Back In a Moment

It has been five years since Max died. It’s been three years since I wrote on this blog. In those three years, I’ve still been writing. And I’ve still been grieving. I’ve also been living--carrying on, if you will. I’ve tried to go with the flow, especially when it comes to grief. So, when I felt like it was time to go a little more inward with my grief, I did. It’s been good for me--I catch myself smiling at funny thoughts about Max, and I welcome those smiles. I’ve caught myself feeling sad or springing a few tears when I think of Max and all that I’ll never know or experience--what he would look like, his personality quirks, first day of kindergarten pictures (that’s coming up in August)--and I welcome those feelings too. In the past three years, I may have been even more surrounded by signs of his enduring presence than ever before. Or maybe I’m just more present, more receptive, more open to those signs. There is a scene in The Secret Life of Walter Mitty that captures what I’ve been feeling. In the scene, Sean O’Connell (Sean Penn) and Walter Mitty (Ben Stiller) sit atop a mountain waiting for a snow leopard, which O’Connell has gone to great lengths to capture on film, to appear. When it finally materializes, O’Connell, instead of taking the photo, simply watches the creature. Here is the dialogue that follows:


Walter Mitty: Are you going to take it?
Sean O'Connell: Sometimes I don't. If I like a moment, for me, personally, I don't like to have the distraction of the camera. I just want to stay in it.
Walter Mitty: Stay in it?
Sean O'Connell: Yeah. Right there. Right here.


So, I guess I’ve been in “a moment” over the past few years, and I’m just trying to stay in it, to experience it all. Now, five years after Max’s death, I’m ready to slowly get back into documenting the moments while still making sure to stay present in them. I’ve written a piece for a website that will launch in June, and I’m going to start adding more content to my blog as well. A friend recently commented to me that “living is the hardest part of grieving,” and she’s absolutely right. My goal moving forward is to focus on the living part that comes after grieving. As I’ve been preparing to share more of my writing, I came across something that I wrote two years ago, on the third “anniversary” of Max’s death. It isn’t finished, but I’d like to share it as is, and then I’d like to add a postscript (below):


Today marks three years of life without Max. I’m not sure what to call it--anniversary seems ill-fitting, as I think of an anniversary as a celebration. I certainly celebrate Max’s life, but I doubt that I’ll ever celebrate his death. Some have called it Max’s “Heaven Day,” which I think sounds nice, but I feel like a phony saying that since I’m not sure that heaven exists. Some people call it Max’s “Angel Day,” which I also think sounds nice, but I am not certain that I believe in angels. These are my personal beliefs, which I hope will feel more solid and clear someday. Until then, I am completely fine with whatever people want to call it, whatever aligns with their personal beliefs. And I am completely grateful and comforted that so many people think of Max as an angel in heaven with such certainty.


If I’m being honest, which is the goal in everything I write here, then I have to admit that my memories of Max are fading. I don’t remember the lines of his face or the color of his hair with the vividness that I once did. Sometimes an object or a sound or a smell will unearth a buried memory, and I’ll think, “Where has that memory been hiding all this time?” I hadn’t thought of it in so long. It’s not that I don’t think of Max. I think of him every day. Several times a day, in fact. But I think of him in intangible terms--his spirit surrounding me, his life affecting my approach to situations, his impact on the world. I don’t think I’ll ever forget certain things about him--the smell of his farts, the sound of his laugh, the feel of his hair, the weight of his body in my arms. I guess that maybe my brain has undergone a reorganization of sorts--it has moved the most important memories and ideas to the most easily accessed part of my brain and stored the rest in the basement, where they can still be accessed with a little work. I find it interesting that this is exactly what I’ve done with Max’s things and all the reminders of him. I’ve picked the most special and meaningful and put those on display or in parts of the house that I access often. I’ve kept the rest, but they are stored in bins in the basement, where I can still get to them with a little effort on days like today. My plan today is to spend time going through all of Max’s things, including those items that I associate with him, but that came after and as a result of his death--cards, the memorial service guestbook, tokens of remembrance, correspondence with other moms, etc. There’s nothing I’m necessarily searching for or hoping to find, other than the feeling of closeness with Max and a purposeful reflection on his life. Maybe I’ll pick up on his smell, which I only vaguely remember now. Maybe I’ll spend the day sobbing and feeling sorry for myself. Maybe I’ll find some peace. Much like life after Max, I have no idea what to expect, but I will embrace it and allow myself to experience it, and then I will give myself permission to carry on.


A few days ago, I found myself wondering how in the world I got out of bed on June 11, the morning after Max died. I had always thought that I wouldn’t possibly be able to carry on with life if one of my children died. I’d actually imagined it--me in bed, unable to find a reason to put my feet to the floor. I imagined that I would remain unable to find a reason, and so I’d just stay in bed and maybe die myself. I am not naive enough to believe that experiencing one tragedy exempts me from experiencing any others, so I have imagined Ethan and Quinn dying as well. I still think the same thing--I’d never be able to get out of bed and carry on. I don’t remember exactly what I did on June 11 when I woke up, but I do remember exactly how I felt. There was a split second when I thought none of it was true--Max was still alive, surely. With the transition from sleep to reality came a physical pain--it started in my heart and gushed through my veins to every part of my body. It literally hurt. I’ll never forget that physical pain. I thought I finally understood that a broken heart was a real thing, a physical ailment. That physical pain was something that I woke up feeling for several weeks after Max’s death, and yet...I got out of bed. Somehow, for some reason that I deemed worthy, I got out of bed and I carried on. I did the hard, heartbreaking work of planning my baby’s funeral. I forced myself to view his body one final time before his cremation. I touched his face, held his hands, let my tears spill onto his body, and then I carried on. I gritted my teeth through the pain of hugging hundreds of people while my breasts filled with the milk that my body continued to make to nourish the baby who was being mourned, and I carried on. I silently (and many times, illogically) raged at the rude cashier, the friend who didn’t reach out, the people who told me that my baby was in a better place and that it was all part of some divine plan, the poor clueless lady who cut me off on the highway, and I carried on. I broke down in stores, in private, in the car, at the doctor’s office, at work, and then I carried on.  


Postscript--that night, I did go through Max’s things. I unsealed a ziploc baggie that contained some never-laundered items, along with the sleeper that Max wore the night he died. These items are in a ziploc baggie to lock in the smell--Max’s smell. Opening the baggie was hard. I want to save enough of his scent to last my entire life because I do forget, and I know I will continue to do so. My memory, however, was restored the second the bag was opened. I don’t know that anything can bring about as intense an emotional reaction as a sensory experience. The scent of some forgotten item has a mysterious and never-failing way of ripping you back into a specific moment in time. I sobbed and sobbed, but I’m glad I did it. I haven’t opened up the baggie again in the two years that have passed, but I will someday. When I’m ready, and when I think I’ve forgotten too much, I’ll open it again, and I’ll take a big whiff and transport myself back to the days when Max was alive, in my arms where he belonged. Tomorrow, I will wake up on June 11, and, like I’ve been doing for five years now, I’ll get out of bed, and I’ll carry on.