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

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.

Tuesday, June 4, 2013

Playing Piano

I have been contemplating this post for some time now. Even after spending hours upon hours writing and rewriting it in my head, I still have no idea what the final product will be. I wrote not too long ago about one of my favorite quotes: "Life changes in the instant." Joan Didion wrote this in The Year of Magical Thinking, also one of my favorite books. I find it odd that I remember the exact moment when I read that line. It seems silly. You hear people say that sort of thing about the moment they received news of the terrorist attacks on 9/11, the Kennedy assassination, a close family member's untimely death, but not about reading a line from a book. When I read this line, it had nothing to do with Max; I first read The Year of Magical Thinking years before Max was even born. What I recognized in that line was something profound though, an idea so simple and obvious that it is easily overlooked, not often given words. Most experienced readers subconsciously skip over articles while reading, so why did my eyes focus on "the" in that sentence? Whatever the reason is, "the" is the most important part of that sentence. Life doesn't change in "an" instant; it changes in "the" instant. "An" is general; "the" is specific. Everyone has "an" instant; only you have "the" instant. To me, "an" instant is something we experience every day. It may change the course of your day, but not the course of your life. "The" instant is something so permanent, so soul gripping, so moving that it is impossible for it to not alter the course of your day and every day after. Life is never the same after "the" instant, and I guess that's what this post is all about.

When Joan Didion wrote about "the" instant, she was referring to her husband's sudden death, which she witnessed. When I write about "the" instant, it is pretty obvious that I am referring to Max's death. It's a universally held truth that the death of a child changes you, but it is not universally understood until you are the one doing the changing. I don't say that to sound elitist or dismissive of those who have not experienced the loss of a child. Not at all. I am surrounded by the most empathetic friends and family, but even they realize that they understand what it's like only to have a friend, daughter, cousin, or sister who has lost a child. Obviously, there was a time in my life when all of my children were alive, so I know what it is to not truly understand the changes that a parent undergoes after the loss of a child. I would imagine, I would empathize, and I would pity those parents of dead children, but I knew that I couldn't really understand. Even after losing Max, I didn't know the ways in which I would change. That's the nature of change, though. It's usually so gradual that you don't realize it's happened until it has, and then all you can do is look back and see it all happening so clearly. Humans rarely have clear foresight, but the clarity of hindsight is startling.

"The" instant that Joan Didion writes about can be distinguished from "an" instant in one other way: "an" instant might change the way you view someone or where you go for dinner, but "the" instant changes every single thing in your life. For me, Max's death changed everything:  the way I view life, how I define happiness, the people I surround myself with, the things I do in my free time, my hopes, dreams, even the way I decorate my house. His death changed my purpose in life, it changed how I interact with people, and how I treat myself. Simply put, "the" instant changed me. I know that seems obvious. How could it not change me? But we rarely stop to think of what it really means to change on a scale so grand that it encompasses every little thing that you thought you knew about yourself. I know that some of the changes that I have undergone haven't been pleasing to everyone, and I am sorry for that. I also know that my changes are not complete and never will be. I am struck now by the irony of my disdain for cliches and how appropriate they have seemed since Max's death. The cliche that runs through my head now is "change is the only constant in life." Don't worry, I'm not going to get it tattooed on my wrist. But even that could change...

As promised, this post turned into something I didn't see coming. It feels a little cleansing and a lot like I just completed a disjointed ramble. As I approach the two year anniversary of Max's death (June 10), I find it harder and harder to express my thoughts and emotions with words. That was originally the intended message behind this post--to say that I'm taking a little hiatus from blogging. Having completed this post though, I think even that has changed. Lori sent me this speech (below) earlier today, and it does a pretty good job of capturing what I feel lately. The metaphor is accurate and eloquently stated. The man who delivered this speech doesn't know what it's like to lose a child, but you wouldn't know it from his words. I am thankful everyday that I am surrounded with people who share his empathetic nature and desire to help me learn to play the piano rather than writing it off. You'll have to read the speech to understand that.


When you lose a child, grieving is a lifelong experience.

When our first child is born, a loud voice says, “Runners, take your marks!” We hear the starting gun and the race begins. It’s a race we must win at all cost. We have to win. The competition is called “I’ll race you to the grave.” I’m currently racing three sons. I really want to win.

Not everyone wins.

I’m here at the national meeting of Compassionate Friends, an organization offering support and resources for parents who lose the race. I’m wandering the halls during the “break-out” sessions. In this room are parents whose children died in car accidents. Over there is a room full of parents of murdered children. Parents of cancer victims are at the end of the hall. Miscarriages and stillbirths are grouped together, as are parents who have survived a child’s suicide. And so it goes.

In a few minutes, I’m going to address Compassionate Friends. This is the toughest audience of my life. I mix with the gathering crowd, and a woman from Delaware glances at my name tag. Her name tag has a photo of her deceased son. My name tag is absent photos.

“So … you haven’t … lost anyone,” she says cautiously.

“My three sons are yet alive, if that’s what you’re asking me,” I say gently.

She tries to nod politely, but I can see that I’ve lost credibility in her eyes. She’s wondering who invited this speaker, and what on earth he could ever have to say to her.

My address is titled “The Myth of Getting Over It.” It’s my attempt to answer the driving questions of grieving parents: When will I get over this? How do I get over this?

You don’t get over it. Getting over it is an inappropriate goal. An unreasonable hope. The loss of a child changes you. It changes your marriage. It changes the way birds sing. It changes the way the sun rises and sets. You are forever different.

You don’t want to get over it. Don’t act surprised. As awful a burden as grief is, you know intuitively that it matters, that it is profoundly important to be grieving. Your grief plays a crucial part in staying connected to your child’s life. To give up your grief would mean losing your child yet again. If I had the power to take your grief away, you’d fight me to keep it. Your grief is awful, but it is also holy. And somewhere inside you, you know that.

The goal is not to get over it. The goal is to get on with it.

Profound grief is like being in a stage play wherein suddenly the stagehands push a huge grand piano into the middle of the set. The piano paralyzes the play. It dominates the stage. No matter where you move, it impedes your sight lines, your blocking, your ability to interact with the other players. You keep banging into it, surprised each time that it’s still there. It takes all your concentration to work around it, this at a time when you have little ability or desire to concentrate on anything.

The piano changes everything. The entire play must be rewritten around it.But over time the piano is pushed to stage left. Then to upper stage left. You are the playwright, and slowly, surely, you begin to find the impetus and wherewithal to stop reacting to the intrusive piano. Instead, you engage it. Instead of writing every scene around the piano, you begin to write the piano into each scene, into the story of your life.

You learn to play that piano. You’re surprised to find that you want to play, that it’s meaningful, even peaceful to play it. At first your songs are filled with pain, bitterness, even despair. But later you find your songs contain beauty, peace, a greater capacity for love and compassion. You and grief — together — begin to compose hope. Who’da thought?

Your grief becomes an intimate treasure, though the spaces between the grief lengthen. You no longer need to play the piano every day, or even every month. But later, when you’re 84, staring out your kitchen window on a random Tuesday morning, you welcome the sigh, the tears, the wistful pain that moves through your heart and reminds you that your child’s life mattered.

You wipe the dust off the piano and sit down to play.

Copyright: Las Vegas Review-Journal

Wednesday, January 16, 2013

"My baby died."

It has been 19 months since Max died, and I have obviously gotten to the point where I don't cry every day. I miss Max every day, and I think about him several times a day. A lot of times, though, I feel happy when I remember him. Quinn has been dealing with a little stomach bug that gave her some pretty raunchy smelling farts. I thought immediately of Max and how his tiny baby farts cleared the room in the hospital. Many of the nurses commented that they had never smelled such horrid gas from a baby. I thought of how sometimes, when we had company or when a new nurse was in our room, I would explain that the smell was coming from my sweet little baby and not from me. I remembered all of these things, and I smiled at the memories. It's not always like this though. I do still get sad. Incredibly sad. It's just probably less obvious to most people. I cringe to think that there are people out there who think that I have "moved on" or "gotten over it" because to me, these phrases are more appropriate for life's smaller disappointments. You move on or get over a break up, not your child dying. You might think about your ex from time to time, but certainly not every day. You might miss certain things about your ex years later, but you certainly don't yearn for him/her with every ounce of your being. No, there is no moving on or getting over your child dying. There is learning a new way of life, making a permanent spot for the grief in your heart, finding happiness in small things, taking comfort in memories, and emerging from the dark, all-encompassing shadow of grief that is inescapable for the first few months. But, there is no "getting over it." (I just have to share that while I was typing the last few sentences, my iPod was on shuffle, and "Walk" by Foo Fighters came on. Not only are the lyrics pretty damn applicable to what I was writing, but "Walk" is a song that I used to sing to Max while rocking him or dancing around in our kitchen. Very fitting. It took me a long time to be okay with hearing that song.)

My sadness comes on a little bit differently now. It's not as sudden, and it's not usually as suffocating as it once was. It's a hard to explain how I get there sometimes, so here is an example of my thought process last night leading up to my most recent "breakdown."

To set it up a little, here is how it started: I was lying in bed, trying to fall asleep, and my lower back was hurting a bit.

I felt a little pull in my back at Yoga last night...maybe that's why it hurts...I should go on more's cold, but I could bundle Quinn up...we have that jogging stroller that I bought off of's really nice...that lady I bought it from was really nice too...I liked her...what if I ran into her somewhere?...she had a daughter Ethan's age...I wonder if I would recognize her...I wonder if she would recognize me...I was pregnant with Max, so maybe she wouldn't...what if she did, though...what if she asked about the baby?...I'd tell her that my baby died...

I don't imagine that I'm any different than any other mom who has lost a child in that something as simple as thinking about my back hurting leads me to thinking about my baby. Sometimes I can just move on from these thoughts, or I can at least replace them with happy memories of Max. Other times, I just can't. Last night was one of those times. I kept repeating in my head, "My baby died." It got louder and louder until it was a scream in my head. My heart speeds up, tears start to flow, and soon all I can think is, "My baby died." I wake up every day and know this, but sometimes it just stops me in my tracks. The reality and the weight of it hit me. It's like I'm being slowly filled with concrete until I am so heavy that I can't move, and I can't escape the thought of Max's precious little body and what remains of him sitting ten feet away from me on his table.

I had a similar episode on Christmas Eve, as I rocked Quinn to sleep in Max's old room (her room now). Her nightlight was on, so I could see into the closet. Hanging in a little corner are two onesies that I bought for Max. He never got big enough to wear them. They still hang there, tags on, because we weren't sure what to do with them when we packed up his room. Honestly, I had these grand ideas that I would be looking for an outfit for Quinn one day and stumble across these onesies and ultimately decide that they were just right, that it was okay for Quinn to wear one. That never happened. As I sat in the chair on Christmas Eve, I became fixated on those onesies. I could clearly remember rocking Max one day and looking at them then. I started saying in my head, "It's not fair." over and over again, until eventually, these words too became a fierce, angry scream in my head. I got a lot of tears out, and then I put Quinn in her crib and left the room. I felt okay for a while, but I couldn't get those words out of my head. I tried to watch a movie, but ended up just calling it a night. I got in bed, but I still couldn't escape those words and the thought that really, it just isn't fair. I said (okay, sobbed) to Scott that night, "We're missing out on so much." I couldn't help but picture a 19-month-old boy ripping through the wrapping paper and smiling with glee at the very sight of his new toy. I wanted so badly to be able to help him open each box, put each toy together, hunt down batteries, and show him how to work each new gadget.

Waves of sadness like this used to feel so overwhelming that I was absolutely convinced that I would never feel okay again. They don't feel like that anymore. I know that I will get through them, and so I don't try to stifle the sobs or rush through the emotions. I want to feel these things because sometimes they feel like the only way I have left to express my love for Max. Yes, they hurt, but I can't deny that behind all of the sadness is a love so intense that it finds ways to break through the surface when I don't always expect it to. There was a time when I worried that there would come a day when I would cry my last tear for Max. The thought of that happening honestly scared me. If I ceased to feel sad, would that mean that I really was "over it" and that I was wrong for saying there was no "getting over it" all that time? I also worried that there might come a day when thoughts of Max weren't flowing through my mind. These moments of sadness help me believe that no such day will ever exist, and as strange as it may sound, I'm glad for that. I guess I am still trying to come to terms with Max's swift exit from my life, but I don't ever want to have to come to terms with Max's exit from my memory and my heart.  

Monday, December 17, 2012

Sandy Hook

It's been a while since I've written a new blog post. I've had a million and one ideas and somehow not made the time to write a single one. I've been jotting these ideas down because there are so many of them, and I'm bound to forget a few. Among the ideas are some topics that are probably expected: getting through the holidays, a recap of Harvesting Hope (which was VERY successful, by the way), and a general update on my emotional status (don't worry--it's pretty good, considering...). There are also a few that probably are not expected: a message from the mom of another Max McFall, a renewed friendship with a high school classmate who recently lost twins. The one that I am sitting down to write today falls into the "unexpected" category, and I wish I weren't writing it. It is about the Sandy Hook Elementary School shootings.

I was out and about the day of the shootings, so I only heard about them a few hours afterward. I was visiting friends at Shawnee Mission South, and my former principal told me about the shootings. I decided right then and there that I didn't want to know any more about this tragedy. I know that sounds selfish, but I am more affected by sad news stories, especially those involving children, since Max's death. I try to avoid them at all costs. I read an article a few months ago involving a newborn baby boy and something so horrific that I haven't shared it with anyone. I wish I'd never read it, but I wish even more that I could stop other people from knowing about it. I know I'm not alone in this either. I had breakfast with the aforementioned high school friend this past Saturday, and we discussed this very issue. We both agreed that we are just more emotional affected by stories of death, namely children's deaths, than we ever were before. Don't get me wrong--I've never enjoyed hearing about children dying, but I wouldn't fixate on them for months and months. I think I have always been a pretty empathetic person, but my mind and my heart weren't trained to think about anything beyond the sense of loss that these families must be feeling. Now, I know better. I think about these poor parents going home to a house full of belongings with no child to possess them. I think about the reminders that will surface months and years from now--a phone call reminding them of a dental check-up scheduled for their child who no longer exists, a birthday card with a 20% off coupon from Toys R Us, the question on forms at their doctor's office and in every conversation with a new acquaintance: "How many children do you have?" I think about the dead children's stockings still hanging above the fireplace and the gifts already purchased and wrapped sitting under the Christmas tree. I think about the horror and helplessness that they feel at knowing that their children's bodies sat on cold autopsy tables where they were methodically cut open, organs removed and weighed, while a stone-faced doctor jotted down numbers on a sheet of paper that will become the final autopsy report. I think about them today. About how their world felt like it ended all over again when they woke up and realized that their children really are gone. I think about how hard, maybe impossible, it will be for these parents to drop their other children off at school, to let them learn how to drive one day, to let them spend the night at friends' houses, and eventually let them move out and fend for themselves in the world. If your child wasn't safe at school, or in my case, at home, then how can we possibly let them out into the world again?

Of course, my desire to not know any more about the shootings quickly vanished when I wondered what would have happened if people decided they didn't want to know any more about Max dying. As soon as I got in my car, I turned on NPR and listened to all the horrific details. I still listened as I sat in the carpool line waiting to pick Ethan up from school that day, and I thought about just how lucky I was to be doing something as normal as picking my son up from school. I thought about how easily Sandy Hook Elementary School could have been Stanley Elementary School, or any other elementary school in the world. I thought about how that first grade class could have been Ethan's first grade class and how those brave teachers and administrators could have been the very ones who I have chatted with and handed my son's life over to every day since school started. I was watching when the Connecticut State Police released the names of all of the victims, and I watched as the MSNBC news anchor attempted to read each one through tears. I don't know what it's like to lose your child to an act of violence and evil like these parents did. I don't know what it's like to think about your child's last moments and just pray that they were one of the first ones killed. I cannot imagine how it feels to be told that your fragile little six-year-old child was shot three or five or eleven times at close range with an assault rifle. I do know what it feels like to have your child ripped from you for no reason, though. And I know exactly how it feels to be left with so many questions, none of which will ever be answered satisfactorily. I know how horrible it feels to know that your child was an innocent victim and that he, you, and the world has been robbed of his life.

In the weeks and months to come, the talk of the tragedy at Sandy Hook will continue to morph into debates about gun control, school safety, teachers' rights to arm themselves, and a variety of mental health issues. I have tried to avoid most of that for now, but I recently read an article that I think is worthy of attention now. Here is the link: It is written by the mother of a mentally ill child who displays violent tendencies, and it is brutally honest. The author brings up many valid points worthy of discussion in this country, but one really stands out to me. It has to do with access to quality mental health care in the United States. This mother has tried everything to get help for her son, but nothing has worked. He has physically threatened his family with knives, harmed himself, and vowed to seek vengeance on others. Despite the very real threat that he poses to himself and others, nothing has been done to truly help this boy. His mother writes about the expense of quality mental health care, about insurance companies' refusal to cover treatments (despite his escalating violent behavior), and about her decision to return to work simply to draw benefits from a group insurance plan that will cover at least part of the cost of her son's mental health treatment. I can't imagine what it must be like to live with a child who you both love and fear greatly. And I can't imagine what it's like to not only know that your child is capable of walking into an elementary school and doing what Adam Lanza did, but also to know that no one will help you try to prevent something like that from happening.

I'm going to share my own little story about mental health and insurance companies. It is personal, and some probably think it is in bad taste for me to share it. While I don't disagree, I do think that it needs to be shared. The point is not to turn the Sandy Hook tragedy into my own, but rather to demonstrate that if it is hard for someone like me to get the care that I need, then you can only imagine how difficult it must be for the Adam Lanzas of the world. I have been very open about the fact that I sought professional counseling after Max died. I met with a grief counselor once a week on my own, and Scott and I met with a counselor together once a week. I was lucky to be covered under a group insurance plan that covered mental health visits at 100%, so I never paid a cent for my private counseling sessions. In September, Scott and I decided that we were ready to start trying for another baby. I made an appointment with my gynecologist to discuss a few concerns that I had. I wanted to be sure that there were no concerns about genetic predispositions to SIDS and that I would physically be okay to carry and deliver two babies in such close proximity. In the past, my gynecologist had also run a battery of blood tests prior to me becoming pregnant. Obviously, the topic of Max and his death was bound to come up since all of my questions and concerns centered around some aspect of his life or death. My doctor asked me if I felt depressed. I very clearly remember my answer: "My son just died. Yes, I feel depressed." She asked me if I had thought of hurting myself, and I said no, that I didn't have any desire to harm myself. She then asked me if I was seeing anyone to help me deal with my emotions, and I told her that I was in counseling twice a week. We moved on to my other questions, she assured me that it would be fine physically for me to get pregnant again, and then I left and didn't think another thing of it. I became pregnant very soon after that, and I didn't see my gynecologist again since her practice does not include obstetrics. When I took a leave of absence from teaching, I lost my benefits. I applied for an individual policy with the same insurance company, Blue Cross Blue Shield, thinking that I could get pretty affordable coverage. I was completely wrong. The monthly premium that I was quoted doubled after my application went through the underwriting process. Why? Because of that visit to see my gynecologist. It turns out that she coded my visit as a "mental health" visit and diagnosed me as "major depressive," a diagnosis that she never shared with me. And in case you are wondering, neither my grief counselor nor my primary care physician (who I saw the day after Max's funeral for my 6-week postpartum check-up and then at least once a month starting in October when I became pregnant) ever diagnosed me as major depressive. Unfortunately, my gynecologist had retired a few months prior to this discovery, and the receptionist at her office told me that "they don't work for Dr.____ any more," so there was little I could do to clear up the situation. I spoke with several people at Blue Cross Blue Shield and at the coding agency that my doctor used. Many of them were sympathetic to my story, but guess how many of them offered to actually do something to help me? None of them. I posed several (in my opinion, valid) questions to Blue Cross Blue Shield: Do you commonly pay claims for doctors to practice outside of their specialty? Should I make an appointment with a cardiologist next time I get a blemish on my face? Can I schedule my next pelvic exam with my podiatrist? Why didn't the mental health professional in charge of my care diagnose me as major depressive if it was so obvious to my gynecologist after a three minute conversation? Did they realize they had paid out a claim for me to see my grief counselor that week in addition to this "mental health visit" when I was only allowed one mental health visit per week? Why would I make a counseling appointment with my gynecologist, whom I had seen only once in the year prior to that appointment? Besides that, why would I be punished for seeking help, assuming that I did want a counseling session with my gynecologist? In the end, I got nowhere. I am a healthy 30-year-old woman who has never had an illness more serious than a sinus infection, never visited the emergency room or been hospitalized for anything besides totally routine labor and delivery visits, has no chronic conditions, and takes no medications. But because I answered a few questions that I assumed were being asked out of personal concern for my well-being, Blue Cross Blue Shield expected me to pay over $400 a month for a high-deductible, high out-of-pocket cost insurance plan. I doubt that my gynecologist knew or will ever know just how much her error has cost me. She will probably never know that we might have to give up on having more children because I don't have maternity coverage on my temporary insurance plan, and she will never know that I wouldn't go to the doctor right now unless I really thought I was dying because it would be way too expensive if I wasn't.

I know that this has turned into a little rant, but I hope that no one sees it as a "poor me" declaration. I don't pity myself or feel sad that I can't get affordable health coverage. I feel angry, and I'm not sure who I'm more angry with: the doctor or Blue Cross Blue Shield. And honestly, this experience scares me and makes me feel pretty hopeless for our world. If I can't get affordable coverage because of one stupid visit, imagine what it's like for people who have had cancer or people who have a child who has a diagnosed mental illness. We will never know if the shooting at Sandy Hook could have been avoided, but it is a guarantee that we will see more Sandy Hook-type incidents if the care that could prevent them continues to be inaccessible. I realize that this is my attempt at finding some sort of purpose in such a pointless tragedy, but I also think that is a rational reaction. I've been trying to find purpose in Max's death for the past eighteen months, and I'll probably spend the rest of my life searching for it. Ultimately, I've done some pretty good things along the way, so maybe it's not as fruitless as it seems. Nothing that comes out of the Sandy Hook massacre will make me forget the beautiful faces of those children, and nothing will make me forget the selfless acts of the teachers and administrators who sacrificed their lives for their students, but I do think that tragedy has a way of inspiring hope and change. My wish is that the idle talk and debating that is going on right now will cease to be just talk and at some point become real change. Shame on us if it doesn't.

Here is a link to a slideshow with pictures of the victims and brief biographies:

Thursday, October 4, 2012

Happiness Complex

Quinn is three months old today. In a way, it feels like she is three years old. In most ways, though, she still feels brand new. I wonder if she will always feel that way to me. I am so in awe of her, and I can't help but feel a weird sense of magic when I look at her. Not to put too much pressure on her, but Quinn is a miracle in my eyes. Not because it was difficult for me to get pregnant with her (because it wasn' all), but because she has given us a sense of hope and purpose that I felt convinced was not possible after Max died. She gives us this simply by existing. Every breath she takes is a miracle to me. Every contagious smile she displays is a miracle. That her little heart continues to beat is a miracle. The past three months have been, hands down, my happiest in the last thirteen months. Quinn is such a happy, easy baby, but I honestly think I would feel the same way if she were colicky and difficult. Her demeanor is just an added bonus to the other joys that she brings me. I cannot help but be amazed when I watch her reach milestones that are meant for much older babies: rolling from her back to her side (she's been doing this for weeks), grabbing at toys, rolling from her back all the way to her stomach, and even trying to sit up on her own (I said trying, not succeeding...). I look at her and see so much of Max and Ethan in her. She is long, like Max, and could have been his identical twin (minus the luscious black locks) at an earlier point in her life. She is stoic and curious like Ethan, although Ethan was never in a rush to try new things like Quinn seems to be. I watch Ethan treat her with the same love and gentle touch that he treated Max with, and I am reminded of how lucky we are to have a 7-year-old boy who still has a soft, loving side that he openly displays. I am, to put it simply, happy. Very happy. Sometimes, I think too happy.

After Max died, I would have scoffed at the idea of someone being too happy. I welcomed any opportunity to laugh for a few fleeting seconds at a stupid joke. I must have watched that Wally World video on YouTube hundreds of times because it made me laugh. For that four minutes and twenty-two seconds, I could feel some sense of happiness and forget all of the pain. Thank you, Mr. Ghetto, for providing me with a welcome distraction. I still haven't mastered the dance moves in the video, but I have mastered the art of using the one-liners in it. Our house was a constant gathering place for friends and family after Max died, and I remember one of our "sleepovers" better than the others. It was the Friday after Max's funeral, and we had five or six friends sleeping over. We sat on our back porch, like we did almost every night, until it started raining. We moved to our garage, and hilarity ensued. I let loose that night and laughed until my abdominal muscles ached. Paul and I still talk about our friend "Bobby" fondly on occasion. I remember thinking to myself that it was okay to enjoy this because it wouldn't last very long. I tried to soak up every second of that night, which led me to stay up way too late. I was right, though: the happiness didn't last. I felt so guilty the next day. How could I be laughing and having a good time when my son was dead? I still struggle with those feelings, but I try to remind myself of exactly what I did that night: the happiness won't last forever, so soak it up and don't feel guilty for doing so. Still, sometimes I have to fight back the urge to suppress a smile or laughter because I think it's just not right to feel any happiness after what we've been through. These feelings have evolved a little bit. I no longer feel guilty for laughing, smiling, or having a good time. Instead, I find myself feeling suspicious of these moments. I feel like I'm being set up sometimes, like something bad is just around the corner. I try to temper my happiness because maybe if I don't let myself feel too happy, then nothing bad will happen to bring me back down to reality. This has been more difficult lately because Quinn does bring me so much happiness. I have these moments when I look at her and wonder for a split second if she really is real. And sometimes I look at her and think my heart might burst with joy and pride. I think about how perfect my life feels right now, and then I begin to panic a little bit. What if I don't deserve this? What if it does all go away? I hate feeling like happiness is temporary or that it comes with conditions. I am so scared that there is some puppet master somewhere measuring my happiness so that he knows just how hard to pull the strings of pain when I let the happiness outweigh the sadness. I wish I could go back to just allowing myself to feel joy without telling myself that it might cost me later on. It's strange for me to think this way, and it takes real effort for me not to give in to the voice in the back of my head telling me to tone down the happiness.

I have no doubt that my reflection on these feelings has a lot to do with a dream that I had a few nights ago. In the dream, I was holding Quinn while she cooed and wiggled in my arms. I walked around with her for a while and showed her off to various people. I finally came to a person who looked at me with pity in his eyes instead of the admiration and love that the others had shown. He said to me, "It's time for us to take her." I was genuinely confused and stared at him wordlessly. "She's dead, Lindsey. It's time for us to take her." I felt shocked. I looked down at Quinn, and she looked up at me, still wiggling in my arms. I kept insisting to this man that Quinn was alive. I tried to get him to see that she was still breathing and moving, that she was not dead. His expression never changed, though. He still looked at me with pity and spoke gently to me, insisting that Quinn was dead. I realized at some point that he must be right; I must have deluded myself into believing that Quinn was still alive and wiggling around in my arms. I remember feeling that crushing sadness that I felt when the fire captain told me that Max was gone. I felt like I'd just been punched in the gut, like I felt waking up on June 11, 2011 and realizing that Max really was dead and that it wasn't all a dream. In my dream, I bartered with the man to let me spend a few more minutes with Quinn, but he wouldn't allow it. Before I gave her up, I woke up. It was very early in the morning, and I was physically and emotionally shaken. I was very confused at first, not quite sure if I had been dreaming or not. Luckily Quinn still sleeps in her bassinet beside our bed, so I realized pretty quickly that I had woken up in a world in which she still existed. I'm no dream expert, but it doesn't take one to see that my dream about Quinn has everything to do with Max and my fear of losing her too. Even though I don't always feel stressed or worried about Quinn on the surface, it's clear to me that I am scared. Terrified, really. I know it's not healthy to suppress these feelings, so here I am, acknowledging them. I'd be lying by omission if I didn't also acknowledge that a small part of me hopes to ward off these types of dreams by digging them out of my subconscious.

To bring this all full I happy? Absolutely. I am incredibly happy. Does that happiness come with conditions? Absolutely. And it probably always will.