Vaccuum

One of the scary side effects of PTSD is having these “trigger moments” that will destroy your day, week, month.

Last night’s trigger moment: Watching Interstellar. I’m not going to spoil it for you if you haven’t seen it, but if you’ve lost a child, proceed with caution. There are black holes, wormholes and a whole host of other stuff that can be a little too much to take if you’ve spent time missing a child and hoping to turn back time.

Absolutely none of this movie has anything to do with my life, but it gets the wheels turning. I think about dying, I think about my daughter dying. I think about how nothing can stop the dying process. I think about all the terrible things that happen in this world and that none of it is fair. It’s like a game of Chutes and Ladders: complete bullshit, and no amount of skill will help you win the game. It’s just luck, or lack thereof.  The part that blows my mind is that everyone on this Earth knows this on some level. Your time is going to be up one of these days. It could be today, it could be tomorrow, it could be in 60 years. Nobody knows! And even though this is a known fact, everybody seems to be able to get up in the morning, get ready for work, have some coffee, play some Candy Crush and go on as if they’re going to live forever.

Most of my life is spent in that happy pocket of denial. I love being there. My mind is never far from Jay, but I can put it in a place in my mind that allows me to go about my day to day. I can still enjoy the luxury of focusing on minutia. I can use my grief as a tool to help me appreciate the special moments with my children on a level I don’t know that I could before. But there’s a line that’s crossed sometimes. You can appreciate those special moments so much that you become acutely aware of how fleeting it all is. That moment of appreciation can become so intense that you slip into the black hole. Once you’ve been sucked in, it can be tough to get out. The reason you find it hard to get out is because you know that everything you’re afraid of, your worst fear, is completely true: One day this will all end.

This thought is crippling for those who have lost a child because we’re unable to live in denial on the level that everybody else is on. We have already pulled back the covers and have seen life’s underbelly. We know what’s coming better than people who haven’t been through what we have. The droves of people who rely on statistics and try to remind us that the odds are in our favor for survival simply do not get it. They do it to make us, their loved ones, feel better. They do it because they believe that everything is going to be alright.  We were robbed of that feeling when we experienced something that went all the way wrong on a level we had never seen before.

That experience will never go away, but how do we move through it? Can we ever get back on that level that other people are on? One piece that has helped me is to make myself accept the fact that the worst can happen and pretend that it’s not a big deal. It’s the old, “Yea, we can die any second, so just love every minute of your life and get on with it” philosophy. At the moment I’m too far gone to do that, though.

The thought of life ending is so sad that I’m unable to enjoy the life I love so much. That’s a shitty little bit of irony, isn’t it?

I’m so angry that this happens to me. Life is hard enough without having to trudge through an overwhelming fear of death and future imagined trauma. I’ve already lost a son; can’t I just enjoy the life I have left without having to fuck it all up with the fear of something that hasn’t even happened yet?

I guess that’s something to hang onto: this happens to everybody. It’s easy to feel singled out when you’ve lost a child. It’s easy to feel like a sad statistic, especially when some well-meaning-but-completely-unhelpful person says “We’re never supposed to bury our own children,” indicating that what happened to us is an anomaly, making an already isolating experience even more so.  But we all die. The only unknown is when. Some of us live long, healthy lives, some of us die before our children have had a chance to grow up. What is the use of hoping and praying that you’re the former?

All I want to do in life is to be there for my children and have some fun in the process. That’s it. Have a good time and be there for the kids. I want my daughter to grow up having some hope. If I die, her level of hope will be decreasing for the third time after losing her brother and then her grandmother. That’s really where my fear lies. I am terrified to my core over her emotional well-being.

How can I harness that fear? I can be there for her, everyday. I can be a role model for strength and survival. I can teach her to enjoy the small things. I can teach her to hope, even when all seems lost. I can teach her how to move through difficult times. I can remind myself that if I freak out too much, she’s going to pick up on it. If I’m not OK, she’s not going to be OK. And when bad things happen, as they do in life, I can do my best to give her the tools to deal with it. My job as a parent isn’t to remove all bad things from my children’s lives, because I can’t. It’s to teach them what to do when those bad things happen.

One thing I try to do before I publish a post is to wrap it up. What did I learn about life with the experience I shared? How have I furthered my understanding of grief and trauma? I don’t have a neat little bow on this one. I’ve been sucked into the black hole for the time being, and so far, am still trying to dig my way out.

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The Great Wean Of 2015

I walked up to the nursing station in the pediatric ICU and leaned against the counter. The nurse peered over her computer monitor at me.

“I need to use a breast pump,” I said.

This was probably the third time I had asked for one. On the way to the hospital, I, for the first time in my life, tried to have a positive attitude. I tried to think optimistically. We would arrive at the hospital, be shown to his room, and he would be laughing and playing with the staff. They’d chide him gently and tell him that he was just a little rascal for kicking his chair back. They’d tell us that they’d seen this a thousand times. And then we’d drive home with him. It would become this story about how we had such a big scare. “Silly old Jay. Do you remember when he kicked his chair back and got knocked right out?” We’d say. I had a mantra in the car ride over. My husband sat silently while I drove. I said to myself over and over again, “I will be nursing him tonight. I will be nursing him tonight.”

People like me who have a tendency to worry do so out of a sense of power. We think that if we worry ourselves to pieces, something bad won’t happen. But I saw something at the local hospital before Jay got transferred that changed that for once. It was a sign near the bathrooms that said, “Positive thinking works!” That’s it. I thought, “If there’s a time I should try thinking positively, this is it.” So I did.

That didn’t work. Maybe I should have worried myself shitless like usual.

By the next day, I knew already that I’d never nurse him again. I had stopped eating and drinking anything, and the extreme stress made my body stop producing milk. I have a tendency to get mastitis on the regular, so I couldn’t take any chances. I had to get whatever milk was in there, out.

The nurse behind the counter finally got someone to get a pump. A young woman cheerfully arrived with it. I looked across to the opposite side of the nursing station and there were two well dressed men sitting outside my son’s room. These were the detectives that drove 3 hours to interview my husband and me. They saw me, but were busy chatting to each other. Their demeanor was soft and easy, but I knew why they were there. I didn’t care that they were waiting. They could wait a little longer while I pumped milk out of my body that was made for my brain dead son.

The girl took me down a hallway that felt like a mile long. I was sure I wouldn’t be able to find my way back. During our 3 day visit at that hospital, I never managed to navigate it successfully. She took me to a tiny room, plugged in the machine and explained how it worked. It was different than my machine back home. It had a couple of extra buttons, and in my mental state of mind, I couldn’t process how to use it. She closed the door and walked away. I was left standing there looking at this machine totally dumbfounded. It could have been a defibrillator. I left the room to go get her. She had to return and tell me how to do it again. I finally was able to get it going this time.

I pumped for probably 20 minutes. Barely anything came out, maybe a couple of ounces at the most. It was green. It was a horrible, sad, heartbreaking experience. I unscrewed the bottles that the milk had drained into and I poured it down the drain. It was gone, like my little son’s life.

I walked back and returned the pump. Then I went to sit down with a detective so that he could interview me on whether or not I killed my son.

Fast forward to the other day, when a good friend told me that they liked the blog post 108 Saturdays. In that post I looked forward to the time that Floyd was older than Jay. She commented on how it must feel nice to be at that point. I concurred, but in my heart I didn’t feel it. Floyd is indeed older now, but I still felt like nothing had changed. I didn’t feel like we had moved into a new era. I mentally concluded that maybe I’d never feel that way.

Over the last several weeks, I have started to wean Floyd. At 14.5 months, I feel like I have done an amazing job nursing him. I feel I can draw this era to a close, and this time, the weaning will be done naturally. I dropped his feeds down to 2 a day, then 1, and as of this morning, none at all. My husband got up with Floyd and dressed him instead of me taking him back to bed to nurse and snooze. He and my husband emerged from his bedroom all smiles. He was so excited for his scrambled eggs he literally shook with excitement. I initially felt terribly sad at the realization that I would no longer make milk for my child. It is truly a gift to do that. Growing food from your body is pretty amazing. That physical connection would be gone. I had a brief moment of regret and considered nursing him after breakfast. “There’s no need to quit! I thought.

I then remembered my daughter, when she was little and I had already weaned her. She was about Floyd’s age, maybe a week or so younger. We had such a great time together when she was a toddler. I loved that time. It was then that I realized that weaning Floyd was the change that needed to happen for me to feel like we had moved into a new era. I never weaned Jay. It just stopped. Weaning would have been the natural progression, a milestone of growing up. Floyd will be able to reach this milestone and move into a new phase of childhood. I could move through this process and heal myself a little from what happened last time. This is the thing that should have happened, but didn’t. I looked at Floyd, sitting there eating his eggs happily. “This is it,” I thought. “We’re ready.”

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Happy Thanksgiving

Jay used to wake up at 6am on the dot every morning. I would bring him into bed with us to nurse and catch another 5-10 minutes of sleep. I always hoped he would nurse and then fall asleep for awhile longer. I think that might have happened twice. Usually he was ready to conquer the world while his father and I tried to keep him occupied. We would give him a toy to play with, or a book to look at while we lay next to him with our eyes closed. Lazy parents. When he’d get bored he’d throw the book at our faces, usually mine. That would pretty much be all the motivation I needed to get up and go make him his scrambled eggs.

Sometimes when I’d lie there, I’d get really down about things. “I’m too &%$* tired,” I’d think. A litany of complaints would fill my head. It’s too early. I don’t want to go to work today. I never get any time to myself. If the pity party got too ridiculous, I’d stop myself and make a list of all the wonderful things I had to be thankful for. I’d always start with the fact that I had two, happy, healthy children. I told myself to make a list of 10 things that made my life wonderful, but I often came up with much, much  more than 10. Once my son died, though, it became hard to even come up with 5.

It would be easy for me to say I don’t have anything to be thankful for, but that’s so not true. The hardest thing to admit sometimes is that there is still a lot to love in this world. Even though most people I know have not had to deal with this level of pain, I can’t even turn into a bitter Scrooge.

I’m going to make a list of things I’m Thankful for. This list is for me, when I’m feeling like things couldn’t possibly be worse, and it’s for anyone else who has lost a child and reads this blog. If you lose your ability to see any of the beauty in this world for all the horror that’s among us, then two people died instead of one.

THINGS I’M THANKFUL FOR

1. My beautiful daughter, who is a survivor, a nurturer, and a better dresser than me

2. My little son, who I affectionately call Floyd in the blog, and at home, call him by other ridiculous names. Leroy Jenkins is the current popular name.

3. My husband, who traversed this tragedy with an endless amount of patience and grace

4.  A nice, warm home that’s plastered with kids art, littered with toys and comes with a messy, overgrown garden as we are too busy loving little kids inside

5. Real friends. My collection of weavers has made such a difference. When you can be as raw as possible and still see smiling faces at your doorstep, you know you’ve made it.

6. My health, at least for now (I can’t be that positive. You’ll have to give me a break on this one)

7. My sense of humor.  I now know that you can laugh even when things are complete shit. Whatever is going on in your life, if you can’t get a chuckle out of absolutely anything, you’re in trouble.

8. My mother. She’s gone now, but moms have a way of staying with you. Her years of unsolicited advice still ring in my head, and if I’m quiet enough, the advice I’m looking for still comes through. Her unwavering support while she was alive still works today. She instilled in me the importance of strength and humor, two giant pillars of survival.

9. Insects, wind, sunshine, and other nature stuffs. Even in the early, early days of grief, when I’d sit on my deck and smoke cigarettes with tears running down my face, I’d look over and admire a dragonfly, or listen to the wind in the trees. I’d wonder what on earth could make me appreciate those moments before coming back to my personal reality of hell. How could something, anything really, still be beautiful? Tragedy and life and death and love and miracles and everything else are all inside the same snow globe, with it all whipping around. It’s all there together. Throughout your life, you’re going to get hit with a little bit of everything.

10. Writing, and my high school typing teacher. I won’t say his name here, but he stood behind me one day while we were instructed to just type anything for practice. He said, “You write like you speak. It’s like there’s no filter. That’s interesting.” I didn’t know any other way to write. I don’t have much of a filter, anyway. But that lack of a filter in writing allows me to take off the smiley mask and just say, at least in part, what’s really going on in my head. I’ve always wondered if people think I’m cold when I can look them in the eye and tell them we lost a son, or that my mother died, and then I soon change the subject.  I can’t get in that space when I’m in line at Trader Joe’s or at a playdate with my daughter. But I can get there now when no one’s looking, and I’m so grateful for the insight and straight therapy it has provided me throughout my life.

11. And as always, I am grateful for my Jay. He taught me more than I ever thought I’d learn.

What are you thankful for?

Posted in Raising Your Living Children, Staying Alive | Tagged , , | 1 Comment

108 Saturdays

107 Saturdays ago, I was at my mom’s house. I was tired. I was semi looking forward to going back home already. It was lunchtime. I listened to my daughter play in the living room with my husband while I made lunch for my son. My husband sat on the couch and peered at his phone. Around 12:45pm, Jay fell.

Then came the 9 Saturdays of investigation. During this time there was the autopsy, the second autopsy and the excruciating conversations about my son’s body, the viewing, the interviews, the meetings with lawyers and a whole level of terror and dread that had never entered my life before.

3 Saturdays later, I was pregnant.  I spent the next 36 Saturdays freaking out about whether we made the right decision, wondered who this kid was cooking inside of me, and at the end of those nine months when I faced a possible birth complication, I went against my nurse practitioner’s advice of “What could possibly go wrong??” and had a c-section.

Then I spent 59 Saturdays getting to know another sweet, beautiful, funny little boy. Ever since I got pregnant I have felt like I’ve been living the last two years over again. We did the same things, shopped for baby clothes at the same stores, went to a lot of the same events and birthday parties. It seemed surreal, like we were living in an alternate reality, where things were almost the same, but not quite. We were all older, but time had somehow rewound. Sometimes it was comforting, other times it felt disturbing, because we did this before and it ended tragically.

A month ago I calculated the exact day that Floyd would be the age that Jay was when he fell. I needed to know when Floyd would be older than Jay. Part of it was surely superstition. Another part just needed to know the day this alternate reality would end. I first had to calculate how many days Jay was alive. I found a website that not only gave me the days, but the hours, minutes and seconds. That was rough to look at. Then I put in Floyd’s birth date and calculated the same number of days.

The date is this Saturday. That struck me as interesting because Jay fell on a Saturday. It was then that I realized they were both born on the same day of the week, making that feeling of living the last two years over again all the more surreal.

We were busy during these 108 Saturdays. I’m ready to have a new Saturday. I’m ready to have the 109th Saturday, where I have a son who is 13 months and 3 weeks. I’m ready to have a 14 month old son for the first time. My hope is that I have a 40 year old son one day. But I know how life works. I can only take it one Saturday at a time.

I had 417 days with Jay. That’s 59 weeks and 4 days. It’s 10,008 hours, and 600, 480 minutes, and 36, 028, 800 seconds. How many of those 36 million seconds did I take for granted? Probably a ton. I don’t know how many seconds I have left with my living children. No matter who you are or how long you live, a day will come when you say goodbye to your child for the last time.

I try to make every Saturday count. I still take moments for granted, I still run low on patience as the day nears to a close, but when I hold Floyd before putting him in his crib, I thank him for coming. I whisper in his ear about what an amazing gift he is to our world, and that he is just perfect exactly the way he is. I used to also whisper, “Please don’t die,” but now that he’s 1, that’s too creepy and could land him in therapy one day, so I try to keep it light. I will always remember these 108 Saturdays, and my life goal is to remember how precious each Saturday is after that, however many we have left.

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Finding a Good Weaver

For your first pregnancy, I highly recommend getting pregnant at the exact same time as one of your very best friends in the world. Nothing is better than becoming a mother with someone who knew you from before your entire life changed.

My fellow pregnant friend and I obsessed over every single pregnancy symptom, analyzed and rehashed developmental detail each week (“I think it’s the size of a squash, but this other website says it’s the size of a banana…is that the same??”) and upon having the babies 30 days apart, experienced the shock and awe of parenting together. Without her, I would have been a hermit (and sometimes was) in those early days. But a pillar of positivity, she would text me a one-liner to get me out the door:

“taking walk with stroller. wanna meet for coffee”

I’d get my daughter ready, grab an extra diaper and hike down the 3 flights of our loft to the ground floor. Unshowered, teeth usually unbrushed, bits of vomit on my shirt, I met her for coffee 2 blocks away. We traversed the Mission District together, sipping caffeine, laughing, complaining. As our kids grew, we planned outings where both of our families would be together. It’s like an extended Brady Bunch.

When I got pregnant again, she watched from the sidelines, and took care of my daughter while my mother stayed with me in labor. She was one of the first people to ever meet Jay, take his picture, to ever love him. Weeks before he died, she put together a bag of clothes that her son had outgrown. She wrote his name on it. The next time I saw her I was going to get them. I was looking forward to putting Jay in these clothes that I watched her son grow up in.

Days later, I walked down the hallway in the Children’s Hospital holding my cell phone. I wanted to find a place to go for privacy, although now I don’t remember why I didn’t want to talk in my son’s hospital room. Maybe I needed to have a conversation without the nurses coming and going, the beeps and boobs of the machines going off. I don’t remember those noises bothering me at the time. But I left his room anyway, traveling left and right through a hospital I wasn’t familiar with. I soon settled down on the floor between two large pillars overlooking the side of the hospital and dialed my friend.

“Hello?”

“Hey, it’s me. I need to talk to you.”

“What’s up?” Her voice light and cheery, as it usually was. She was away at her vacation house, with friends or family, I can’t remember. I imagined her seated comfortably on the couch, a beer in one hand and her son running around somewhere nearby.

“Jay fell and hit his head, and we’re at the hospital right now and he’s probably going to be declared brain dead.”

I dropped it like a ton of bricks. I had been living this nightmare for over 24 hours by the time I called her. It felt like a week already. I had barely slept or ate in 30 hours, not that I was really aware of it or cared. I had to just say it. Amid calling family and hearing several times “We’ll pray for him. He’s going to be fine!” there was just no sugarcoating this semi truck full of utter hell and bullshit. Given all the time in the world at that moment, I didn’t have enough to say it any other way than that.

“What?! Are you kidding?” she asked. This clearly was over the line of what could possibly be deemed a joke, even by my standards, but I knew what she meant. There had to be another reason for me saying what I did. There had to be a better, logical explanation for why I was making that statement. I couldn’t possibly mean that Jay was brain dead, because that is otherworldly. It is too horrible. It couldn’t be true. And yet I was not only telling her this on the phone, ripping her weekend into a thousand pieces, I was asking her to get up to speed without a moment’s notice. I was asking her to comprehend the worst about my son who she had known since his birth.

“They don’t understand how this happened. They think we hurt him. We’re talking to detectives.” I went through our whole ordeal. I barely remember the rest of the conversation. I don’t remember hanging up.

Whenever I did hang up, it was back to my son, back to the doctors and the detectives. I didn’t imagine what my friend and her husband were doing. I didn’t think about them at all until she texted me the next day. ” and I have been looking online and doing a bunch of research. Our friend is an attorney who is familiar with these kinds of situations. You need a lawyer.”

When we got back home, my friend watched my daughter play with her son while I frantically made phone calls and faxed paperwork for medical records. She watched silently while I did everything I could to to protect what was left of our shitty ass life. She offered anything I could possibly need. And when she looked me in the face and told me she thought everything would be ok in the end, I believed her enough not to lose my mind.

That bag with her son’s clothes, the one with Jay’s name written on it, is in my closet now. Full of her son’s old clothes. When Floyd is big enough to wear them, I will think of how they were intended for Jay, and that Floyd wearing them is like weaving an old life together with a new one. That weaving together of both lives happens often, and it’s healing, because it allows you to move forward while staying connected to the person you lost.

I’m lucky enough to be surrounded by people who make this weave happen. A handful of magical people who knew me before motherhood, and before Jay died. They see the parts in me that are paranoid and fearful. They let me have all those pieces without defining me by it. I’m not the lady who lost her son, and then her mother. I’m just me. And that allowance gives me the freedom to be both those people. The regular mom and the fucked up person. If you lose a child, I recommend having one of your very best friends in the whole world around. Someone who knew you before your entire life changed. Someone to help you keep the weave going.

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The Real Ever After

It’s been almost 2 years since my son died. We have a 9 month old baby. My daughter has started Kindergarten. I feel like this is the image people see that are on the outskirts of my life. I hate to tell them the truth. It isn’t because I don’t think they can handle it. It’s because I don’t think they want to handle it. I’ve learned that the last thing people want to hear after hearing bad news is more bad news. Things are balls right now.

I think we would have been in a pretty decent place if my mom hadn’t died. I used to tell my mom, half-jokingly, “You cannot die!” I told her my daughter wouldn’t be able to handle the one-two punch of losing two people within 18 months of each other. And this isn’t like losing your great-great uncle whoever and an auntie you never met. These are hard hitters. A brother and a beloved grandmother. My mother had a way with her that was so easy. My girl can be a tough nut to crack, especially when she knows all you want is a cuddle. She’s like finicky cat, only coming to you when you’ve finally given up. But not with my mother. My mother would stroll in and have my girl in her lap within 5 minutes. The love was undeniable.

My mom tried not to die. She survived 4 years with invasive ductal carcinoma, stage 3C. If you aren’t familiar with the lingo, let me explain: it’s some serious shit.

Right after my mom died, things were manageable. I think it was shock. My daughter was extremely sad and grieved outwardly, but there weren’t problems. When the shock wore off, when the realization came that my mother would never be seen again, the anger began. And this isn’t a 6 year old storming off to her room and slamming the door. It was screaming, yelling, throwing things (like scissors), hitting, slapping, kicking, destroying things, etc. My husband and I tried various tactics. None of them worked. She is already in therapy. I gave the therapist an abysmal weekly update, which seemed to worsen with every passing week.

It was like I was losing my daughter. She was in hell and couldn’t get out.

It reminded me of our trip to Hawaii when I was pregnant with Floyd. My daughter was playing in the water and got taken down by a big wave. She disappeared for a moment, and then popped up, hair in front of her face and a little out of sorts, but she was OK. Now she was getting pummeled by the water over and over again. I was afraid eventually she would stop wanting to come back up.

Finally, and this was 3 days ago, something shifted. I changed my tactics for the hundredth time and something worked. She was able to come back from the brink of insanity. The next day, she did it again. The anger still comes in waves, and we’ve learned to never turn your back on the sea. For 72 hours now we have dealt with the anger as soon as we see the swell appear. It is not easy. She has to follow my lead, so if I slip up, we’re doomed.

I first notice her face. It tightens. Then her entire body follows, with her body becoming rigid. Her arms become like two metal rods pointing towards the floor, with a closed, iron fist connected at the end. That’s the beginning. That’s where we need to intervene. The recipe is:
-One statement of reflective, attentive listening.
-Another statement naming the anger
-A closing statement about expectations

There were a lot of shitstorms before I got this recipe down. Here was our morning today:

Tired and angry, glaring at me from the stop of her stairs:

“Baby, I understand you don’t feel like going to school. I can see you getting angry. What do we need to do? Do you need to stay in your room a bit longer?”

“No!!!”

“OK then, I suggest taking a moment to calm down. Breakfast is in 5 minutes. I don’t want you to come down until you’re ready. We’re planning on watching a show together later this afternoon. You don’t want to lose that.”

She disappears back into her room. She comes down. Still angry. Body still really tight.

“I see you’re still angry. Do you need to go back to your room?”

“No! I’m hungry!”

“OK, are we having overnight oats?” Her fave breakfast. Google it.

“Yes.”

“OK, then chill out.”

She tries to be sarcastic by making her torso go limp.

“Thank you.”

That cracks her up. WHEW. Telling an angry child to “chill out” is not going to be suggested in any parenting books. However, in retrospect, she physically relaxed her body, and when she did it was paired with a statement that made her laugh. That combo got her let go a bit.

“OK, let’s have a seat.”

This stuff only works if I deliver every line with an “I love you but I’m not going to take any crap” attitude. If I get too warm and fuzzy, the anger just takes over and I literally get hit in the mouth. No joke.

I tried a light-hearted hug after she seemed calm. “By the way, good morning.” I went in for a hug and she shrank away.

“No,” she said.

“No hugs?”

“No.”

“Ok, no hugs.” It’s OK to not feel huggy yet. I can respect that.

It’s time to brush hair and teeth. More whining, but I gently guide her into the bathroom and it works. She’s hanging in there. This time she’s able to manage the anger on her own. Her attitude isn’t fantastic, but she’s staying in the game, which is a huge improvement.

In the car, off to school. Kisses and hugs goodbye. We are barely making it. Baby steps. I know the recipe is only working because she’s getting stronger inside. She’s trying. A week ago, it probably wouldn’t have worked. We’ll keep plugging along. I’ll keep watching for those swells. We’re going to be in the water for a long time.

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A Repeat of Love

A friend recently pointed me to another blog written by a woman who lost a child. The blog discussed the weird questions you field when you’re pregnant again after experiencing that loss. Well-meaning folks want to make sure you aren’t going to screw up the next kid because you’re trying to replace the one that died. I wrote a post about it right before I had Floyd.

But something happens after you actually have the kid. You suffer through the first few months wondering if you’ve made a horrific mistake, and you ache terribly for your lost child. That deep hole of pain that seemed to lessen over time opens up again, and you’re falling faster than ever, thanks to extreme sleep deprivation, sore nipples and plummeting hormones.

Eventually you begin to sleep a little longer. Your new child begins to smile, then laugh, then scoot. His personality develops and he’s interacting with the family, and before you realize it, you find yourself undeniably in love with this new child. This person who would never have existed had you not disappeared within the bowels of hell, only to pop back up again, albeit a different person now than you ever were before.

This new child–and I hate saying the word new, but he is a new human being, is his very own person. Yes, everyone I know has called Floyd Jay on at least one occasion, but he isn’t Jay. Floyd will give me a smile and I will see Jay’s eyes, but those eyes are Floyd’s, through and through. There is no question that Jay will never be replaced by anyone, ever.

But something happens several times throughout the day that is the same. Things that could be called a “replacement” if you choose to view it that way. The moments before bedtime when I rock Floyd in his room, the only sound being my whispers and the whir of the white noise machine, or the times when I walk with him to go pick up my daughter and I quietly chat to him about what we see or where we’re going. Those moments are the same. That love is the same. The people who stood too close to me with tears in their eyes when they found out I was pregnant, the ones who clutched me and told me the new baby would be “so healing”, well, they were right. Love is healing. I think a lot of people in my position who have lost a child and had another one are hesitant to talk about it for fear that people will think that you did replace a child, or that things are totally OK now that you have another baby. Sometimes I want to wear a sign that says, “FLOYD IS AMAZING AND HE HEALS MY HEART, BUT I STILL REALLY, REALLY, REALLY MISS MY SON JAY AND WOULD DO ANYTHING TO HAVE HIM.” But that would be a very big sign and honestly would not make me any new friends. So I write a blog post instead that says the same thing.

Yesterday morning I sat with Floyd, who had just woken up from a nap. He was fussy for some reason, even though he had already nursed. I held him in my arms on the couch and talked to my daughter, who was sitting next to us. My husband, who was standing about 15 feet away, suddenly looked a little concerned.

“Is he alright?” he asked.

I looked down at Floyd. He lay motionless in my arms. His eyes were open, but weren’t moving. He had a faraway gaze that I haven’t seen since Jay fell back in the chair.

“Hey! Are you alright?!” I jostled him. Another second went by with no change. He then looked at me and smiled.

“Jesus Christ,” I said, restarting my heart. Floyd took a minute to zone out in mama’s arms and I almost lost my mind.

We’re never too far away from ground zero, or at least it seems. I will take that love that I get from Floyd and celebrate it. I will be grateful for it on a level that I never was before. I am a person who has loved and lost in an awful way. But once you lose a love like that, you have the ability to hold onto it so much tighter when it comes around again. Is the love “replaced”? Is it just plain “new”? Does it matter?

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Mama

I went down to my mom’s a couple of weeks ago. This wasn’t a normal visit. My mom’s cancer was getting the better of her and she was about to go on hospice. She took one last chemo treatment just in case it would help get the tumors under control, but her oncologist didn’t hold out a lot of hope.

This wasn’t a normal visit. It was most likely going to be the last visit.

I met my brother at the house. He arrived a couple days before. I walked in anxiously, got my shoes off and went upstairs. My mother…my mama…lay there weak and nauseous. Seeing her, it became very obvious. This was the end.

Over the course of 6 days, hospice nurses came and went. My brother and I doled out pain medication as scheduled, and reassured her that it wouldn’t be long. “How much longer??” she asked, completely disappointed that she kept waking up each day. “You’re really, really close, mom. We just don’t know exactly when. Your body will go when it’s ready.” What do you say to your best friend when she’s just waiting to die?

And then the middle part came. The stage when your best friend is so tired, so weak, that conversations can’t happen anymore. Every question, every tidbit of information she wanted to impart was so important because it was the last words we would ever share. Communication is a phrase, or half a question that you can’t answer because you didn’t get the second part, or God forbid, you didn’t quite hear it the first time and she’s too weak to repeat it. It is then that the mourning starts, because that’s really the end. The end of hours of talking and listening. The end of phone calls that last forever. No more advice given, solicited or not. Your best friend is too weak to hold hands, to smile, to wink. No more jokes shared. There will never be another walk on the beach, another July 4th fireworks at the Pismo Pier, another trip up to my house. No more text messages, gripe sessions or silly voicemails. You both sit and wait for her to die. She’s miserable. It’s hard to watch. You don’t want to lose her, but you want this to end for her.

And then it happened. The person I could say almost anything to, the person who made me, left. I held her hand, smiling and crying. Crying because I was about to lose her, and smiling because we both knew that what she was waiting for was actually happening. “I’ll see you soon, mama. I love you.” And she was gone.

I want to talk to her. If I could have another conversation, it might start with, “Hey, did we do alright in those last days? Were you in any pain? Did you get sick of us asking if you were in any pain? Were you comfortable? Did you like the nurses?” If I could speak to her, I’d thank her for letting me help her. To be sure, losing my son and then losing my mother is a giant pile of bullshit, no doubt. But she gave me something as she left. She gave me a chance to say goodbye. She gave me an opportunity to be with her as she left this world, showing me a different experience of death than the one I saw 2 years ago. My mother was too young to die, but at nearly 71, she lived a full life, and battled the hell out of cancer. She gave it all she had for years, and she never gave up. She didn’t want to die, but she faced death with absolute fearlessness. Saying goodbye to her over the last days of her life healed my heart a little bit. I miss her to bits, but she continued to teach me things up until the last second of her life. I love you, mama.

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Letters

When we had Floyd, many friends sent heartfelt baby gifts before and right after his arrival. These gifts were particularly meaningful because all of these well-wishers knew what we had gone through. Each package that arrived in the mail came with what felt like the warmest virtual hug; an understanding that something beautiful was arriving after experiencing something utterly horrific.

One of these such gifts were a collection of books. They were for Floyd, but aged appropriately so that my daughter could steal them for a couple of years. One of the books bore Floyd’s  name in the title. The friends who bought the books told us that the book was obviously for an older child but they thought we would enjoy it. I read the book aloud to Floyd for a few days, but he became antsy as there were no pictures. My daughter found it and asked me to read it to her. We got a few pages in and found that there was another character named Jay. I wasn’t sure what her reaction would be, but she loved it and asked me to keep reading.

Each day we read 1 or 2 chapters, and even though I often had to stop to explain to her what was happening in the book, she kept spurring me on to read further. I finally realized that she was waiting for the Jay character to make another appearance. We got all the way to the end and realized that he really just had a bit part in the book. I knew she was a little disappointed, and to be honest, so was I. I enjoyed reading this book where both Jay and Floyd were together.

The next day we looked online and learned that there were more books and toys to go with these characters. What? We could get a Jay doll? We were discussing the possibility of getting it when my daughter said, “Mama, remember when you said that you felt like Jay talked to Floyd when he was in your tummy? Well, I think he did.” She was referring to a conversation we had awhile ago when I told her that sometimes I felt like Jay met Floyd somewhere along the way because they are so much alike. It was such a short conversation that I was surprised she remembered it.

Then my daughter disappeared for a few minutes and came back with a note, written in her handwriting. “Mama, guess what I found! It is a secret note from Jay.” She reads the note aloud. “Dear Mama, Papa and . I miss you and hope to see you again. Love, Jay.” She looks up from the note. “Mama, I actually found this secret note and it’s from Jay.” And then she pauses. “Actually, I wrote this, but I want to pretend it’s from Jay.”

I smiled at her. “I would love to pretend that.”

She went on to produce 3 or 4 more notes from him. It seemed to make her feel so good to pretend to communicate with him. She wrote him back each time, and she wanted to make sure they were put somewhere he would be able to find them. She took them to his urn and placed them there.  It made her happy to know he’d read them, and afterwards we had dinner and nary another word was discussed about it.

Later that night I came downstairs to go to bed and saw the urn again. 2 bright yellow pieces of construction paper lay against it with my dear daughter’s handwriting. What was a happy-ish occasion a few hours earlier just looked like the saddest thing ever now. Handwritten notes from a child to an urn of ashes.

At 17 months in (Wow, 17 months exactly today. Whew.), I am asking myself daily how we ever got to this place. And while I can take that feeling and jump down into a deep, dark hole, I have to remind myself that what my daughter did the other day was helpful for her. This is an OK thing to do in her eyes. She carries a sadness around with her that she can’t always access, but the image of her letters up against her brother’s urn is much worse for me to see than it is for her. She’s not quite old enough to fathom how utterly depressing that is.  Images like that make me feel like I will never have hope again in my life, but for her it’s a way to talk to him. A way to feel a connection when the real connection was severed so suddenly. My flippant comment about the idea that Jay told Floyd about his soon-to-be family sparked hope in her, even when it is absent in me. Was it OK to give her something to believe in, even if I might not believe in it myself?

I think the answer is yes. I think she needs something to hope for at five years old. And even though my rational mind may say otherwise, I thought up the image of Jay meeting Floyd in my head for a reason. It feels good to have hope. It feels good to believe in something, even if you’re lying to yourself. It gives you something to grasp when you’re falling from a cliff. Where hope is concerned, sometimes you gotta fake it till you make it.

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Better

A few months after Jay died, people started asking me if things were better. If they were too nervous to ask me, they asked our friends. The answer I and everyone else gave was no. I hoped that after a year, things would be at least a little better. It’s now been 16 months, so I thought I owed an update to those asking.

I don’t often get that deep, terrifying sadness that I used to get. I’m not even sure I can describe that feeling. I think I’ve likened it before to dropping down an endless black hole. Like the feeling you would get in your chest if you’ve accidentally fallen off the Empire State Building. That moment when you know all is lost. That is the scariest feeling I’ve ever had. I only get that occasionally.

I can tell you that I don’t cry every single day. Most days, yes, but not everyday, and the crying is short. A few tears here and there when I’m thinking of him or smell his things. I never knew how much I would rely on my sense of smell when grieving, even though I never, ever smell him on anything anymore. But I keep smelling just in case.

Everytime I picture him in my mind, it’s not really him. It’s the memory of a picture or video I took of him. After the Sandy Hook shootings, one of the dads who lost a son said that everyday he feels further and further away from his son. Boy, he really nailed it. That is exactly it. Jay feels millions of miles away and I can’t even conjure an original memory of his face without trying really, really hard. I did it last night and cried. I miss him so much, and I hate that he’s been gone so long that his face, this face that we made and looked at every single day, is being erased from my mind.

I endlessly ask “Where are you?” That’s a question I started asking in the early days and I still find myself uttering that all the time.

“Where are you?”
He’s dead.
“No, but where are you? How can I get to you?”

Maybe it’s a factor of the human condition: an endless need to keep going, to refuse that death is really final. Not necessarily heaven or hell, just somewhere, where the energy that was Jay is still something I can access. I’m not sure that ever goes away.

When I lie in bed at night during a particularly sad moment, I still tell myself to wake up. I still hope it’s all a dream. Because this would never happen in my real life. It just wouldn’t. And then I tell myself that I’m awake, because I know I am. I tell myself that this is real, forever. And sometimes that’s when the hopeless off-the-Empire-State feeling comes. The reality that life can indeed be this dark. And it is. And it’s my life.

I have joy and laughter every single day. My family is what saves me. Well, that and my sense of humor. If I didn’t give myself the laughs I don’t think I could make it. Having a sense of humor in your darkest hour will keep your head in the game.

I can’t say I look forward to the future. It’s still too scary. I just try to appreciate the moment I’m in. The future isn’t guaranteed. Before you give me credit for living for today, don’t. This carpe diem thing isn’t built from courage. It just comes out of being terrified of the unknown and a devastating fear of death. Mine, my kids, my family. I’m not sure that will ever go away, that loss of hope. That’s a tough one to deal with. In fact, losing hope is one of the hardest parts about this level of grief.

So, is this better? Yes, it is better. I know I just gave a litany of super depressing paragraphs, but if you’re asking me on a scale of 1-100, with 100 being the worst grief I have ever felt, I’m at least down to the 90’s, and that’s something. Where I’m at now is the place I think I’ll be for a good while.

It’s a slowly, yet constantly morphing state. There are setbacks and improvements. The grief of losing a child is like working on the Winchester Mystery House. New rooms develop, projects get finished and new ones begun, and no matter what you do the end result is just, well, not done.

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