He was here

Posted on August 21, 2013 by A Life After Loss

6 months in, I go about my day to day in a pretty normal way. I take my daughter to school, manage the household stuff, talk to friends, hang out with my husband and tend to the one, lone tomato our garden has yielded this year.  Jay is not always on my mind, but he is most of the time. Sometimes a feeling comes over me that’s a combination of utter sorrow and complete horror. Definitely the worst feeling I have ever experienced. Sadness of what is and horror of what has happened.

Lately I’ve tried to piece out exactly where this comes from. I want to deal effectively with this grief. I don’t want to cover over the sadness, nor dwell in a useless sludge of tears. I want to concentrate on the piece that scares the shit out of me. Is it a thought? A fear? Is it that he died? Seems obvious, right? But I don’t think that’s it, exactly. He died. That’s something that happened. But he’s not dying every day. I deal with the grief everyday, I don’t deal with the event. And there’s the loss, of course, we all are dealing with the heart-wrenching loss of him on a constant basis. I can’t cut the crusts off of my daughter’s bread everyday without wanting to lose it because I can no longer put it on his food tray. But I toss it in the compost now and slather a heart-stopping amount of mayonnaise on my daughter’s sandwich (because that’s how she rolls. Don’t judge). I move on with my day.

So it’s not just a case of the sads. It’s not just the loss. It’s not the accident, even. I think I figured it out. It’s the horror piece that got my attention. It’s the fact that he was here. I look at our family pictures. Photos that were taken candidly, before showers or teeth brushing. Everyone laughing and eating and talking and living. We were those people. We were that group. We lived in a world where this just doesn’t happen. It’s that “me” who is horrified. That me in that life with that happy group of people who’ve never called 911 in their lives. We live in Marin, for goddsakes. Our kids don’t die.  It’s the fact that we, as those people, existed at all. And one day they all left. Now we’re people who laugh and tend one tomato while our son’s ashes sit on our dresser. We’re people who know how wrong shit can go. And you never come back from that.

Our son’s handprint is on the round hand mirror in our master bathroom. His fingerprint is on the fireplace. There used to be a handprint on the shower tile in the bathroom downstairs, but that has since been smudged away by water and footprints. I have a lock of hair in a bag that we cut when we was in the hospital and we knew he wasn’t coming home. I have the tag that was put around his ankle when he was born. I have pregnancy photos and pictures of us right after I gave birth. I have stretch marks on my stomach in the shape of a fiery sun. I even have a tiny piece of the end part of the belly button/umbilical cord that falls off. We have over one thousand pictures of him.

He was here. We were all together. The horror isn’t necessarily what we live everyday. It’s the realization that we actually had a completely different reality.

In my kitchen, where I’m writing this, our old family photo stares right back at me. I really miss those people.

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Class Photo

Posted on August 13, 2013 by A Life After Loss

This is my daughter’s 3rd year at the preschool she attends. It’s a lovely school. One of the things they do each year is ask that everyone submit a family photo to be displayed prominently in the classroom. It’s one of the many ways they try to bridge school life and home life. Last year we took a lovely picture sitting on an indoor bench in the living room. We took it especially for the class because we usually can’t get it together to actually take a family photo at any other time. It was all four of us. I had one arm around my son and the other around my daughter, with my husband smiling proudly next to us.

When Jay died, I saw that picture every time I went into her classroom. It was sad, but I liked it. This was still our family, I thought. It’s still accurate, even though he’s not here anymore. At the end of the year we got the picture back, and it is now displayed in our kitchen.

This year we received our “Back to School” newsletter, which again asked each family to bring in another photo for the year. My heart sank. We were going to have to submit an updated photo. I briefly considered submitting the old one. It wouldn’t be fair to our daughter. She was a year older and everybody else would be turning in a recent one.

I talked to my husband about it. He agreed we needed to take a new one. The idea made me cry. “I don’t want to take a new picture with him not in it,” I said. He understood. We were silent for awhile as we moved about the bedroom, getting ready to attend a birthday party for a child we barely know at our daughter’s school. I dug through my jewelry box, trying to find a pair of earrings to jazz up the tired-ass floral dress I wear every time it’s hot outside. I saw a double-hooped gold pair that I bought when I was with Jay about a week before he died. That pair always makes me feel close to him. While I put them on, I had an idea.

“Maybe when we get home this afternoon, we can take our family picture and I can wear my Jay earrings. That way he’ll kind of be in the picture.”

Then my husband knocked it out of the park. “I was thinking that we could take our family photo with a picture of him in our picture,” he suggested. That idea made me cry. I loved it.

Later that afternoon, we all gathered around the same indoor bench as last time. My daughter sat between my husband and me. We chose a closeup photo of our son, taken weeks before he died. We experimented with the setup. Initially my daughter wanted to hold the photo. We tried it. It looked too weird. My husband suggested taping the photo in the corner of the window we were sitting in front of. That made him look too far away.

We finally settled on taping the picture to the window, between my husband and I, above our daughter. Both of our kids were between us. After about 10 takes, we finally got one where no one’s eyes were closed, my daughter wasn’t making a silly face and everyone looked good. It came out great.

The photo is a blatant statement: Our son died and he is still a major presence in our everyday lives. It is a testament of our need to physically include him in everything. One day, I’m assuming, we won’t need to do that. We will all know that he is there in our hearts and we won’t need to actually have his photo in the picture. Maybe the ability to do that involves a level of acceptance that we haven’t arrived at yet. A part of me hopes that one day just keeping him in my heart will be enough. Another part of me hates that idea because it makes me feel further away from him than I ever want to be. Just the thought of that makes me want to scream from the rooftops, “JAY IS OUR SON!!!! HE WILL ALWAYS BE OUR SON!!!!” and then run around town holding a giant picture of him, protesting what happened to our life.

I think Acceptance (capital A here) isn’t the same for everyone. It shouldn’t mean feeling “all better” or not sticking your loved one’s photo in your family picture. It’s figuring out a way to survive, and to do it well. I don’t know what that means for me yet. We aren’t doing anything well at the moment. Well, I take that back. I’m pretty proud of all of us most of the time.

I remember right after I had Jay, I had to take our then dying cat to the vet. I wrote the following paragraph as part of a different blog:

“If you can avoid strolling into the vet clinic with a newborn, a dying cat and your purse, I would highly recommend it. But we had no choice. I sat in the waiting room, sweating and looking tired. A man walked in with a golden retriever puppy. I was right in the middle of thinking how lucky he had it, only having to think about a puppy, when he said, ‘I bet you’re busy, huh?’ That was all I needed. The flood gates opened and I felt I needed to tell this stranger EXACTLY how busy I was. I started off with, ‘This is my second baby. I have a three year old….’ He said, ‘My girls are both in their 20’s now.’ I said, ‘I just don’t know how to spend enough time with both of them,’ wanting to cry. He smiled and said, ‘You just do the best you can. Just do the best you can,’ and disappeared down the hall with his new doggy. ”

I’m not even going to get into how I wish to be back there, sweating profusely and scared out of my mind. These days a whole different level of fear is at hand. But what that man said has stuck with me. We are definitely, undeniably doing the best we can. Good job, us.

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Shoes

Posted on August 6, 2013 by A Life After Loss

A few months ago I had to take my daughter into the pediatrician’s office for her 5 year shots. The doctor did a regular examination as well and I happened to remember a mole my daughter has between her toes that’s in the shape of a straight line. The doctor took a picture of it and referred us to the dermatology department for them to take a closer look.

The dermatologist determined the mole was fine, and decided to check out the rest of her body. Freckles here, moles there. She focused in on a small collection of freckles on her body and decided that my daughter might have something called neurofibromatosis.

“What is it?” I asked. The pediatrician was oddly vague, explaining it as a genetic disorder.

“But like…what is it, exactly? Are there any symptoms besides the freckles?” Again, the pediatrician talked around it, and wanted to refer us to the genetics department for further testing and counseling.

“A lot of children who have it tend to have abnormally large heads. They also will sometimes be developmentally delayed.” My daughter has a pinhead and is smart as a whip.

“Hmm. That doesn’t really match.” I countered.

“And I know, this is a really embarrassing question, but I just have to ask. Is there any chance you and your husband are related?” She queried.

I looked at my daughter and back at the doctor. My daughter is brown. I am white.

“Uh, no. My husband is Indian.”

By this time my daughter is jumping up and down singing and dancing. No amount of scary parent glare on my part will make her calm down. She is anxious as hell and we leave with her terrified of her freckles. We go home and I Google the diagnosis. Terrifying. No treatment. No cure. I measure her freckles. The diagnosis doesn’t seem to add up. I don’t call the genetics department. I don’t take her in. I’m not going on another rollercoaster this year if I don’t have to.

Fast forward to last week when a strange, dark growth appears on my daughter’s eyelid seemingly overnight. Fear envelopes me. Oh my God, was the dermatologist right? My daughter is one of the most beautiful things I’ve ever seen. Will she be covered in horrid skin growths? Was Jay’s death just the beginning of a long line of horror?

I took a picture and sent it to the dermatologist. “Here’s the beginning of another bullsh** ride,” I thought. I zoomed in on my iPhone to look at the growth more closely. It was surrounded by tiny blood specks, the growth taking on an odd shade of blue. It didn’t look like a mole. It looked like a tick.

A TICK! IT’S A TICK! THANK CHRIST, SHE MIGHT ONLY HAVE LYME DISEASE! THAT’S CURABLE!” We spent the better part of the afternoon trying to find someone at Kaiser who had the stones to take it out of her eyelid. “Opthalmology,” they said. We sat for what seemed like a year in the waiting room, only to finally be called in so that they could take a moment to give her a vision test while a blood-sucking, disease carrying insect burrowed further and further into her eyelid. The doctor did ultimately take it out, with her on my lap while I wrapped my arms around her teeny 33lb frame. After a few moments of sitting completely frozen, it was out. No growth, no neurofibromatosis, and likely no Lyme disease, it was gone. I got the species identification results of the tick this morning: “Dermacenter species not a vector of Lyme Disease.” Awesome.

I am always, always looking for another shoe to drop. I live in a world where there is no control. I feel like I saw the underbelly of the universe and I can’t unsee it. I hate people who believe that good things happen to good people. But this time, in this instance, things turned out well. And I’ll take it.

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Safe Travels

Posted on July 30, 2013 by A Life After Loss

This past weekend we flew to Vancouver, BC to visit relatives. I had never been there before and it had been a few months since we went anywhere, so off we went.

Traveling is not easy for me these days. We’ve gone out of town only once since my son died, and I didn’t bring anything of his with me on that trip. We went to Palm Springs with friends. The first two days were pretty great. The third day I was sitting in our rented car outside the resort sobbing and smoking cigarettes (I don’t smoke) wondering how I was going to make it through an entire lifetime without my son. Not good.

This time I came prepared. I packed my son’s coat that I sleep with in our carry-on bag. I figured if the plane crashed, all 4 of us would be together. No PTSD here!

We boarded the plane and I sat between my daughter and husband. The flight attendant fired up the safety video and I watched that thing as if we were absolutely going to crash and this was my only chance to learn how to save my daughter. “…a flotation device is located underneath your seat and can be used in the event of a water landing.” I felt underneath the seat. It’s really there. My head filled with questions. “How do I get it out? I can’t crawl underneath there. Do I just pull it? Do I unzip something? This video is crap.” My anxiety over the flotation thing under the seat made me lose focus and I got worried that I missed the explanation on where exactly the tabs were that I’m supposed to pull on the life preserver to make it blow up. I felt nervous, but fairly certain I pretty much knew what to do if the plane crashed.

The jet engines started up and moments later we were in the air. I peered past my daughter and looked out the window when we were a few thousand feet up. OH MY GOD WE’RE GOING DOWN!!! No, we weren’t. I need to chill out. I thought about the fact that we had to land, take off and land again before I was safely back on the ground for good. This level of crazy couldn’t last. Thankfully I got myself together for the landing.

Vancouver is ridiculously beautiful. Somehow one city manages to cram mountains, beaches and forests into one area. We spent a nice afternoon with family and things went well until it was time for bed. I silently changed while my daughter lie sleeping in the same room as us. I lay down on the bed and curled my arms around my son’s coat. I felt too far away from him. But how can that be? Do I feel like he’s at home? Is it because his ashes are at our house? My eyes blinked in the dark thinking about what it was exactly that made it so hard to be away. Guilt is definitely a part of it. “Have a great time while your son sits in an urn, alone in the house. Don’t forget to take pictures!” I cried in bed without making a noise, picturing his urn in our dark bedroom at home. “He’ll never see this beautiful place,” I thought.

The visit was nice and I’m glad we went. I’m not going to stop traveling. I’m just not good at it yet. I need to figure out a way to feel close to him everywhere I go. I know you can buy memorial lockets where you put a loved one’s ashes inside and wear it. I might need one of these. I wonder if it would help. I’ve looked at them online. They all seem to have this awful style to them. I’ll have to keep looking. Oh my God, what a thing to buy for your son.

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The Pendulum

Posted on July 24, 2013 by A Life After Loss

Last week I had several pretty good days. Some friends came into town that I hadn’t seen in a few years. It’s therapeutic for me, and for anyone I think, to spend time with people who have known you forever. They know you well enough that they don’t have to pepper you with questions, even if they don’t have any answers. The answers are in the nonverbal looks and gestures, the answers flowing out without questions ever being asked.

I have also developed great ways of being with my daughter. With her being my surviving child, I am constantly marveling at her beauty and her humor. I stare at her still-brand new skin and think, “I’ve still got her.” This magical collection of cells and energy, a collection which happened once in history and will never happen again, is still here. I’m far from a perfect parent, but I take more time with her than I used to do. I listen more intently, hug a little longer, and hold off on giving an impatient sigh when she asks for the 5th hug before I close her door for the night. Being with her has always been an absolute joy, but now it has a deeper level of magic because I don’t know…well, I just don’t know. She is a constant ray of light for me.

I laughed quite a bit last week. I allowed myself to feel some moments of joy without immediately admonishing myself and feeling guilty afterwards. It’s not that I didn’t cry. I did, just not as much.

It’s times like these where you wonder if you’re doing as well as you think you are. The first time it happened I wondered if something inside of me had shifted. If maybe I had moved to some different level of grief. It was also a scary feeling, because I felt a little removed from my son. It’s a red flag, one that you tuck in the waybacks of your brain.

Then the pendulum swings back. Hard. The level of happiness you feel is directly correlated to how bad it becomes later. If the pendulum goes way, way into the happy zone, you can feel pretty confident you will be hit in the face with that thing when it swings back later. The longer the pendulum takes to swing back, you know you’re in for a zinger. It took me a few times to realize this. I’d be going along feeling pretty good for sometimes a few days at a time. I’d start to feel a little scared, wondering why I wasn’t feeling as close to him, why it wasn’t hurting so bad. And then something would happen and the pendulum would come full throttle back to me, leaving me wondering how I will ever, ever survive this.

The pendulum came back on Sunday. I was looking at his picture, as I do every day. All of the details about his death came floating back. Details that no parent, no relative at all, should ever have to experience ever. Details that are simply too awful to write. The pendulum isn’t really a pendulum. It’s the brain’s door. The door shuts for awhile to give its owner a break from reality. The break feels odd, like something isn’t quite right, but it feels pretty good. The longer the door is shut, the wider it opens later on. Right now the door is wide open.  The feeling is so bad I wish it’d never shut again.

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Gifts

Posted on July 15, 2013 by A Life After Loss

Last week I received a beautiful pair of handmade earrings in the mail. They were made using Swarovski crystals and my son’s birthstone. I can’t wait to wear them because it’s something I can have on me that will always remind me of my son. Also, they were given to me by the mom of the boy who has my son’s heart.

It’s hard for me to write about this. As I’m typing it, I’m not even sure I’m going to post this. The whole process of organ donation, both before, during and after is incredibly emotional. It didn’t take us that long to decide to donate. It is something we would do for ourselves and we thought, as our son was going to die no matter what decision we made, that it would make the most sense to give other people a chance at life.

But the decision didn’t come without drawbacks. After the moment I learned that my son was brain dead, I longed for the moment they would remove all the tubes and I could finally hold him again. I imagined that scenario over and over again during the days in the hospital. I would finally be able to see and kiss his face unencumbered by tape and tubes, and be able to hold him without lying on a cord or something else that I feared would interfere with his care. After we made the decision, I learned that all of those tubes, the tape, the cords and the noisy machines would all be staying on. The time I held him moments after he fell would turn out to be the last time I ever would.

They then took blood from me, as I was still nursing. They had already run a toxicology panel on him, but I assume they wanted to make extra sure there wasn’t anything in his system that shouldn’t be there.

We left him there, still connected to everything, and went home to our terribly worried daughter who had no idea yet that her brother had died. We drove the 2.5 hour drive home in the rain. All of the worst days of my life are within the span of February of this year through now. That day was one of the worst.

Weeks later you receive a letter from the Donor Network telling you what was successfully donated. A 6 month old boy received my son’s heart. A 5 month old girl received his liver. And a 26 year old man received both of my son’s kidneys. It is nothing short of mind scrambling to consider that your child is gone, and yet there are parts of them still here, in other people that you don’t know. How can that be? Is that OK? Does this make sense? I remember getting a questionnaire in the mail from the Donor Network asking about my experience with the donation. One of the questions was “Do you feel positively about your decision to donate?” My answer was “I think so.”

So far, we have received correspondence from the 26 year old man with the kidneys and the mom whose son has Jay’s heart. I email the mom several times a week. She lives in another state, so even though we would like to meet one day, it probably won’t be soon. I long to hug that little boy and have Jay’s heart be next to mine, even for a moment. I made that heart. But I need to be in a place where I can be objective, or at least not sob uncontrollably and run away with anyone’s kid (kidding, I think). I don’t even know how I would act.

I have read quite a bit on organ donation, and it has introduced me to several schools of thought, such as the belief that a brain dead person may still feel pain during the donation process. I don’t know the answer to that, and I cannot go back on the decision we made. It’s just another horrible, horrible thing to consider on top of everything else that’s happened. The trauma doesn’t seem to ever stop.

It was my goal for this post to write something that wasn’t so sad. Sorry. That totally didn’t work out. There are things I don’t even write about here, so at least you can rest easy knowing that I at least keep the saddest things off here. Maybe one day I’ll write about them. I have to keep the balance between using this blog as a way to express my feelings and experience and at the same time hold onto my sanity. It’s a tough line sometimes. It’s still my goal to incorporate the joy I do find in life still, because I do find it. I will promise to do that next week.

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Proof of What?

Posted on July 8, 2013 by A Life After Loss

I sat in my therapist’s office several weeks ago talking about how so many parents of deceased children seem so sure that they will be reunited with their child in the afterlife.  The belief is so prevalent in these circles (Yes, there are actually “parent’s of deceased children” circles!) that it almost appears as a given.

I complained to my therapist that as much as I want to believe that there is something else after death,  I have no proof. “I don’t have the receipts,” I told her. She wrote a title of a book down on a Post-It note and handed it to me.

“Read that. Let me know what you think.” The Post-It note read: Proof of Heaven. “It’s written by a neurologist,” she said.

A neurologist! Now this is something I can read. I imagined reading a book by a neurologist detailing hundreds of experiments where he is able to determine beyond the shadow of a doubt that some level of conscious thought survives and goes somewhere else. Some form of organized energy that goes forth after the physical body stops working. I ordered it right away. This is the thing I needed. The receipts, if you will.

I received the book in the mail and promptly lost it. Had to order to it again. The second time around I managed to crack it open and dove into the prologue. Just a few pages in, any hopes I had for some kind of answer were completely dashed. It sadly appeared that this neurologist was sorely lacking in knowledge about..well, neurology.

I’m no doctor. The things I have learned about medicine come from the tiny bits and pieces I’ve picked up as a conservator and the time I spent with my son in the pediatric ICU. Both of those experiences combined still place me firmly on the moron level of medical knowledge. But there are a couple of things I do know.

The author of the book was terribly ill, almost died and was placed in a chemically induced coma while the medical team attempted to get his bacterial meningitis under control. While he was in the coma, he went to a magical, heavenly place that sure did seem like heaven.  The author places all of his evidence, the entire basis of his proof that heaven exists, solely on the fact that his brain had shut down and he had experiences that transcended brain function. In other words, if your brain is broken, experiences you have couldn’t have come from your brain, right?

Well, I can get on board with that. Except for the fact that this man’s brain wasn’t broken. You see, a neurologist should know that a coma is not the same as brain death, and this is where my moron-level medical prowess comes into play.  A coma can certainly lead to brain death, but you can also wake up. If you can wake up, that means your brain is still functioning on some level. That specific level depends on how badly your brain is injured, and like I mentioned above, this was a chemically induced coma, one that the medical team put him in and had the power to take him out of.  In a coma, one retains reflexes that a brain dead person does not have.

The author continually tries to drive home the fact that his brain was essentially turned off during the entire experience.  No, sir, it wasn’t. I know what turned off means.  I’ve seen it.

I got about a third of the way into the book and thought, “I just can’t with this guy” and closed the book. Yes, I was disappointed, and surprised that the book had been a bestseller for years; sales that were undoubtedly driven by tons of  people just like me, looking for hope.

Recently I was somewhere talking to Jay, doing what I normally do when you’re talking to someone who doesn’t walk yet and doesn’t have a lot of words: narrate. “Look at those! Aren’t those pretty? Oooh, look at that one! Do you think you’d like something like that? I sure would. What do you think of that one?”

If anyone were around, they might think it a bit odd that I’m totally alone and talking out loud to no one. I talk to Jay constantly. Talked to him the whole way into work this morning, out loud. Of course I hope there’s a heaven, or someplace else, anywhere, where I can arrive, see him sitting on the floor, and go scoop him up. I imagine that scenario all the time. Maybe he hears me when I talk to him. Maybe he doesn’t. But I miss him so bad that talking to him let’s me go back to when he was here. It’s too hard to just go forward. One therapist early on told me “You just need to put his clothes in a box and open it up when you’re ready.” I didn’t see that guy again. I can’t imagine not going into his room all the time and touching his clothes, or kissing the changing pad where his head used to go. Is there a heaven? Hope so, but I’m pretty sure I won’t know the answer anytime soon.  It doesn’t change how I do things now. Nor will it ever, most likely. I’ll always talk to him, and will always hope with all my might that I will be scooping him up again one day.

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This morning I got on the elevator at work. A coworker I don’t know very well came in after me. She’s in another department and I really don’t know who does and doesn’t know about my situation, so I tend to avoid people’s eye contact like the plague, hoping we can all pretend things are normal during the 20 second ride up. Well, she couldn’t.

“How are you doing? Are you feeling better?”

“Nope! Not one bit.”

“Well, you look great.”

“Thanks.”

She looks at me reassuringly. “It just takes time.”

Going through this hasn’t been tolerable for a second, but it seems that lately things are worse. It’s been four months, which I have found is time enough for the shock to wear off and for you to settle into your new life. It is always hoped that grief moves in a linear fashion, and that one would surely be better at 4 months than you were at 2, but sadly that isn’t the case. Maybe that happens on a yearly basis.  I’ll keep you posted. For now: still horrifying.

One of the reasons for this is that while you as a parent are still reeling from what has happened, some of your caring friends/coworkers are no longer reeling. Some people reeled for maybe 5 minutes, and then they were all done reeling. It is their hope that you’ll be all better so that we can all just get on with our lives.  Most of the people in this group aren’t ones you see everyday, but people on the periphery who have not seen you inches away from losing your mind.

Another reason is that things just don’t end. One thing ended, which was our old life, but things continue to pop up all the time that remind us where we are and why we’re here. We recently got an invitation to attend a memorial service at the children’s hospital where our son died. It brought up a bunch of stuff, obviously. Just looking at the invitation with his name on it was incredibly difficult. Someone will text me who I haven’t heard from in awhile, and the last thing I sent them was a video of Jay way before he died. Every time my daughter rings the doorbell for fun, my first thought is, “Don’t do that, Jay is napping.” I attend therapy as well as my daughter, so that means I’m going to therapy appointments twice a week, the sole reason being because Jay died. I know that I’m known by a lot of people at my daughter’s school as “The lady who lost her son.” It’s like going through life in a full-body cast. Can’t really get around it, can’t forget about it, can’t even drive, eat, shower or laugh without being consumed with it pretty much all the time. But people see you walk into an elevator and smile and think, “Awesome, so it’s all back to normal, right?”

I’m sure when I post this, some people are going to sigh and think, “Shit, not another sad post.” I don’t know how to get around that. I used to post about breastfeeding and sleep training. But I posted about those things because that was my life. Now I have a different one. I like the idea of writing as a way to connect with other parents who have also lost a child, but I also hope to give people some insight on something that I hope they’ll never, ever experience. No one ever talks about this stuff. It’s one of the millions of reasons this is so hard.

The other day my daughter was in the bath and asked me, “Mama, can we have another baby brother?”

“I don’t know, sweetheart. Maybe we can try, but I can’t say for sure if it would happen. And it might not be a boy. What if it’s a girl?”

“A girl? Well that would be OK!”

You know, if we did have another one, it wouldn’t be Jay.”

“Why not?”

“Because they would be their own person. Every baby that comes out is different.”

“Well, we could NAME them Jay!!”

“No, we actually could not do that.”

“Why not?”

“Because they are their own person, baby. They need to have their very own name.”

“Well you could give them my name because my name is going to be Daisy now.”

She still is the same beautiful light of my world that she has been every day of her life.  I am so thankful for her. Because I lost my beautiful son, I am terrified of losing my daughter, and probably always will be. But I have her now. I have her today. And today is all we have.

Posted on July 1, 2013 by A Life After Loss | 5 Comments

How are you??

Posted on June 24, 2013 by A Life After Loss

I am constantly asked how I’m doing. How am I doing? I usually say “Fine”, “I’m here”, or my new one: I just ignore the fact that they’ve asked and I say, “How are you?” That one’s easiest.

Here’s how I’m doing: I think about my son constantly, all day long. I can probably go 30 minutes sometimes without thinking about him if I’m engrossed in something else. The longer I go without thinking about him, the worse I feel when I come back to reality. My brain saves up the grief because it doesn’t have anywhere to put it while I’m thinking of something else.

I never dream about my son. I wish I did. I would do anything to see him again. But my brain feels differently. I don’t think my subconscious can handle dealing with Jay when I’m asleep, as that’s the only break my brain really gets from it all. So in an effort to save my sanity, my brain just shuts that off when I’m asleep.

I cry every day. I smell his clothes and touch his belongings, even though nothing smells like him anymore. I go to therapy. My daughter goes to therapy. I spend lots and lots of time watching videos and looking at pictures of my son. I still wish this were all a dream. But I know it’s not.

We have people over. We go out. We watch TV. We laugh, make plans, and play with our daughter. We have found a way to move forward. The ability to do this initially came as something we just had to do for our daughter’s sake. Neither my husband nor I could give up on her. We couldn’t operate as though life wasn’t worth living because Jay was gone. I have seen many parents do this to their still-living children as witnessed by reading countless missives written online by parents who have lost a child. We will never do that to her, even during the toughest moments. She has already lost one family member. She won’t lose her parents, too, if we can help it.

Physically, it feels like someone is gently but firmly squeezing my heart. I feel that in my chest all the time. Sometimes when I wake up in the middle of the night from a good sleep, The Squeeze (as I call it) is gone. I go to the bathroom and sit down, and slowly, The Squeeze returns.

Even after writing all of this, I still can’t say how we’re all doing. It sucks. Life is more painful than I ever thought possible. We’re dealing with it the best we can, and we’re doing it because there’s no other choice. It just is. We just are.

Posted in Newly Grieving | Tagged , | 5 Comments