I’m staring at the photo of you I selected for this post and for your obituary. It’s one of  the few photos that we have of you and it’s how I always remember you.

My sweet red headed baby.

It never gives me any comfort to think of you as an adult spirit. You were my sweet, snuggly little baby and it’s how you stay in my mind.

Oddly, though…I feel the need and absolute desire to talk to you like a grown up today.

You would have been an amazing man, Matthew. Talented. Kind. Gentle. Strong. Much stronger than your mother ever could be. I wish more than anything that I could see you as a happy, fulfilled adult some day.

But it can never be because you died.

It’s been six years today since that horrible day that ripped us all to more pieces then we’ll ever find again.

I feel like I have aged centuries in these six years, Matthew.

There are so many thoughts twisting up my heart and tumbling through my mind this year about you.

I wonder if you knew your brother Aaron before he came to us. Somehow I keep thinking that you must have had a say in just what kind of spirit was going to be sent to our little family. If you knew that our family needed this particular little bundle of sweetness that is your little brother?

Aaron being here is very…complicated.

When I thought about what having a new baby in our family would be like I could easily imagine all the love and joy. I didn’t anticipate how much seeing and having a little one that is so close to your age on this day would hurt and tear at me.

Sometimes when I kiss the bridge of his nose I flash back to what it felt like to kiss yours. When he’s sleeping and I can only see the top of his head and nose I see such strong glimpses of you. It fills me with such joy to see you in some form that is alive and in motion that it takes my breath away much of the time.

While I absolutely love him for the individual that he is, seeing you in him can make me so happy my heart almost bursts.

I wish I could say that it was all good images that I remember. Too often when I snuggle or kiss or nod off rocking him I start in a cold sweat remembering your cold skin, your horrible wounds, the way your little body felt in my arms when your breath left it and you turned cold.

Do you know what that does to someone?

Sometimes I have had to look up to see hell.

If only I could give you my life to give you yours back; to make you breathe, live and grow, I would. I would trade my existence for yours without a moment of hesitation. I would fight tooth and nail and bloody my hands pulling and trying for the mere chance to make it happen. I try to live with my fury and disappointment at the inadequacies of the natural laws of this world that will never allow my to even TRY angers me, like so many other things regarding your loss. I try to put my rage at your loss on the least harmful targets as possible to spare those around me,  but it doesn’t always work.

What’s in my head escapes and hurts myself and others. I wish they would go away. There isn’t a far enough, dark enough, safe enough place that I can find to erase those images and there are many times that I have thought they would drive me insane. So insane I thought it would be impossible to survive through your loss many times, Matthew.

I often feel I will never be whole again.

But…

There is Aaron…this little baby.

A second chance.

And while it is still so very hard and I sit here struggling to get out of this very big hole I’m in?

I love him so much.

He has brought so much love and happiness to our family, Matthew.  He has made your loss more bearable in so many ways. Your father is a different man since he was born. Your brothers are proud little mother hens that adore and watch out for him.  He has saved your mother.

I wonder if you know all these things.

I hope so.

I know that you didn’t want to leave us, I KNOW IT.  I don’t blame you for ANY OF THIS.

Never.

EVER.

You are my sweet, sweet boy and you always will be.

I have to think and believe with how much we loved and treasured you that you miss us deeply and wish you were here with us as much as we long to have you back with our family.

No matter how lovely and perfect heaven is supposed to be?

I can’t imagine it being happier than being here with those that loved you so, so much.

Sometimes I feel silly writing these things to you or talking to you in the shower or in those really horrible hours of the morning with the light is blue and cold and lonely.

So many people of faith around me say that you are with me, that you are my guardian angel, that you are proud of me. I’m not sure about that. I want it to be that way. I want you to be around me, guarding me, giving me comfort, being proud of me.

If you are up there or here or wherever and you can see my life and be with me?

I’ve done the best I can, but I am not capable of a lot.

I’ve hurt so many.

I’ve lost so much.

I’m so messed up.

I have set back after setback after setback. I think that I am doing well, that things are better, that I can actually function and be free of this debilitating sorrow that is so tied to you and then BAM!

I’m proved wrong.

I’m in a pretty dark and deep hole right now, Matthew. I wish I could be different for you. For everyone. For myself. I wish I could just be…fixed.

I have so many good and wonderful things about me. Why can’t they just stay center stage and outshine the other all the time?

Why do I keep falling down SO HARD?

So MANY times.

It’s exhausting to keep going through. For me and everyone that touches my life. It’s too much sometimes. I wish I could look at this like someone I want to get away from and distance myself from it.

I don’t have that luxury.

I get to stay right here. Front and center. Yippee.

And I feel like a failure.

Over and over and over again people tell me that you are here, with me and that you will give me comfort when I feel you.

But I don’t.

I don’t feel you here with me.

What kind of horrible mother says that?

Doesn’t feel their child’s spirit around them?

So I try.

I pretend.

I hope, and wish and try to FORCE IT TO BE SO.

But I just…don’t.

It has tortured me for a very long time.

A longtime friend that knows me inside and out lost their father at a young age and I confided this horrible guilty secret to them quite some time ago. They told me that it took years and years before they could take comfort and feel their dad around them. They were just too hurt and in pain to do so before then.

Just like they knew it would, it comforted me and gave me hope that one day I might.

That it would help combat how I feel all the time.

I hurt for you. I ache for you all the time.

I cry and sob and RAGE that you didn’t get more time here.  That you didn’t make it to four months like your brother did. That you will never have a first day of school, a first kiss, fall in love or give me a beautiful redheaded grand daughter to make up for the fact that your father is the only single chromosome male IN EXISTENCE.

Not one single day goes by where there isn’t at least a twinge of pain in my heart for you and it shows.

The fall out from your death is so big and ugly I wonder if I will ever stop feeling the effects of it. I have been asked again and again and again if it gets easier.

Sometimes I am actually truthful in my answer.

No.

No, it doesn’t.

It never, ever gets easier…I just get better at dealing with it.

Until I don’t.

And the process starts all over again.

I know this has been a hard day. A difficult letter. One I hope you understand.

Even if I am not through enough of my hurt and pain to feel you here with me yet?

If you’re really here?

Please don’t leave me.

Please.

To get through life without you I will need you by me every second of the way until I see you again.

Until I do?

I think about you.

I miss you.

I love you.

ALWAYS,

Your mama.

You don’t have to read it.  You don’t have to comment although you are more than welcome to. I certainly don’t expect it. People can only say they are sorry so many times, you know? If you do though, I thank you from the bottom of my heart. People and their kindness is why I have gotten through to the point that I have.

I’m writing this for me, because I need to.

September 23rd marked five years since my son, Matthew passed away.

Obviously, today is Thursday, the 25th not Tuesday, the 23rd. I didn’t write a post about it on his anniversary.  There are a lot of reasons why, but what it came down to is that I needed to write a post about it today.

Many people think that September 23, 2003 was the worst day of my life.  They aren’t far from correct, but if you get down to the nitty gritty, the most horrible day of my life was Thursday, September 25th.

That probably doesn’t make a lot of sense to you, does it? I don’t blame you. I would have made the same assumption. In many ways that day WAS the worst day of my life. It was forever altered, ripped apart by the worst loss there is.

The day Matthew died was an ordinary Tuesday, except it was really, really busy. I ran a lot of errands and my parents came over to help me with fall cleaning. I still have the “To do do” list I planned for that day tucked away in a journal. Bleaching the grout in my shower was on there but “have your life shatter into a billion pieces because your baby will die today” was nowhere on it.

For a long time afterward, I would stand with water streaming over me in my shower and stare at that grout and feel grief that hours I could have spent with my son on the day he died were taken up cleaning that dingy grout in my shower with a Clorox bleach pen and a toothbrush.

It so wasn’t worth it.

The late afternoon came with an exhausted me and a request from my sister to come and make some beef stew because she had a mammogram earlier in the day and then had to take her girls out to get homecoming dresses.   I didn’t want to go. I was so tired. My sister is more like my mom and she’d do anything for me and I’d anything for her. I knew she was exhausted and her family had been dealing with a whole lot of trauma and ugly things that I am not free to write about here.

So, I told Jonathan that I was going up the street to help her and he asked if I was taking the boys with me. “Of course not! Just bring them up for dinner. I’m making enough for everyone. I’ll call you.”

Matthew was asleep in his swing.  I stopped to look at him and then I walked out the door.

The next time that I saw him he was minutes from being pronounced dead, laying white and lifeless on a gurney in the trauma bay of the ER.

If any of you have been near a baby lately you will know what I mean when I say that babies are not supposed to be STILL.  Some part of them is always moving, squeeling, cooing, jerking.  It is sooooo WRONG to see one lay as still as my son was.

Jonathan was sobbing, and I was desperately trying to process everything that was happening and that had happened in the previous half hour since the phone rang at my sister’s house, bringing my nieces screaming into the living room that the baby wasn’t breathing and me tearing like mad to get to a car and drive down the street to my house.

There were so many emergency vehicles all over the lawn and side of my house that for a moment I thought my entire family had died.  Jonathan was with Matthew in a red fire department ambulance that tore away from the curb just as I arrived so I hopped in a police car with my sister and got as much information as I could about the situation from the policeman who was driving us MUCH TOO SLOWLY to the hospital.

Apparently, Jonathan checked on Matthew and then 20 minutes later checked on him again. He called 911 and began CPR.

20 minutes.

20.

That is a long time to be without oxygen and it was very much on my mind as I stared at the monitors in the ER.

It’s odd what your brain can pick up on. I noticed that the nurse standing nearest to me was wearing light blue scrubs and that she had a hot pink butterfly barrett holding her dark hair to the side of her ponytail.

Somewhere mind registered that my shoulder was throbbing because when I arrived by police escort to the hospital the door to the bay was locked and instead of knocking or waiting, some inner motherly instinct to get to my child at all costs took over and I hysterically slammed my body against the door to break it down.

They wouldn’t let me in the room unless I could “be calm and let the doctors work”.  It took me a moment to speak because when I got the call that Matthew wasn’t breathing I literally screamed and screamed and screamed until my body gave out and wouldn’t let me anymore.  I rasped out that I would do whatever the hell they wanted just let me GET TO MY BOY.

There were so many doctors and nurses gathered around him that I couldn’t see Matthew’s face. He was only wearing a diaper and one little sock.No matter how hard I tried to keep coverings on all my son’s toes, he seemed to perpetually have one sock or bootie missing.

I keep that one little sock in the drawer of my nightstand to this day.

There were huge, horrible syringes with big needles jabbed deep into the front of his legs. It looked so painful. Tubes were everywhere and monitors were beeping and alarms kept going off. When the nurse moved away to write on the white board, I saw a large, burly man in scrubs administering CPR very quickly with just two fingers.

I continued to stare at the monitors with readings that resembled a lie detector when it’s recording someone in the middle of a whopper.

Some part of me knew that something was wrong.  I don’t know how else to describe it other than I have been an actress almost my whole life and I know when I am seeing a performance.  They were doing what they were doing so Jonathan and I would know that they tried everything medically possible to save him.

I am an almost completely emotional person but at that moment I was almost completely analytical.  I continued to take in information and analyze and I kept going back to the fact that Jonathan didn’t know how long Matthew had been without oxygen.

20 minutes…

I kept thinking over and over just how long that is for a brain to go without oxygen.

It took me years to admit, even to myself, but in those moments a tiny little voice wondered, “If they revive Matthew and he is horribly brain damaged, could I deal with that? Do I want him alive at any cost? Even if he is severely impaired?”

Not a pretty thing to know you thought as they were working on your kid, huh?

It caused a lot of pain and damage and guilt for me over the years.

I asked the doctor to level with me and be very blunt.

“How does it look for him?”

“Not good.”

I took a deep breath in and said, “Oh.”

After a few more minutes, the activity seemed to decrease and I knew what everyone in that room was thinking, but didn’t want to say.

So, I did.

I told them they could stop and I moved in next to my son and laid over him and broke into more pieces than I will ever be able to put back together.

I had little breaks in my sobbing where I would pull back and take in exactly what was done to my son in the process of trying to save his life.  He was intubated and very obviously…dead.

Do you know one of the most horrible things for me in those moments?

There was a very large part of me that was totally freaked out by it EVEN THOUGH HE WAS MY SON.  I think that most humans are just ingrained to fear death and dead bodies.I had never seen a body that wasn’t already prepared for burial and I did not think that my son would be the first.

It was horrible.

I made myself look at his eyes because I didn’t want to be afraid. I didn’t want to be afraid of the body of my sweet little son and yet…I was. The were blank and empty and not at all like they should have been.

I know quite a bit about the death process, but there is nothing that can prepare you to hear the slow, hissing, congested “death rattle” that happens as the oxygen is exiting the body for the last time. Worse than the sound was that even though I KNEW what was happening there was a tiny, tiny flare of hope that somehow it was a miracle and that he could survive. That flicker would die as fast as it came and bring on a fresh wave of grief and despair.

There was so much that went on that was highly emotional and gut-wrenching, but if I ever want this post to end, I will skip ahead three hours to when Matthew and I parted.  I was sooooo freaked out by images of a metal gurney and him laying on it with a sheet over his head and I did.not.want. to let him go. I only able to because his body started to change.  It was getting cold and there was blood that started to settle in different places and I couldn’t watch it happen. So, I told the nurses that I was ready for the funeral director to take him.

The people in the funeral business know what they are doing.

There was no stretcher.

The very big man with kind eyes in a dark suit told me that he was going to carry him out in his arms. It made me sob with gratitude that he was going to continue to be held and that I wouldn’t have to see him wheeled away covered up.

He held out his arm so that I could transfer Matthew over to him and he did not move one solitary muscle to take him.

He waited stock still until I, as Matthew’s mother, GAVE him up and allowed him to go.

Somehow he knew how very, very important it was for me to not have my son taken from me any more than he already had been, but for me to say it was ok to take him away.

I didn’t think it was possible to break any further, but I did in that moment.

I had to be sedated.

I went home and thanks to a shot and a hefty supply of pills, one of the worst nights of my life came to a close.

So…what could be possibly be worse than that?

The day I went to the mortuary.

Matthew died early Tuesday evening.

Wednesday was spent running around like a crazy person making arrangements, buying duplicates of everything I could get my hands on that Matthew would be buried with, finding a burial outfit, answering a million questions and making more decisions than I thought were possible. We spent a very long time at the mortuary writing Matthew’s obituary and making decisions about the funeral.
They laid out the basics about what was going to happen with Matthew and what I would have to do to prepare his body for burial. I asked where has was at the moment.

“They just got back from Salt Lake with him.”

“Why was he in Salt Lake?”

“That is where the medical examiner’s office is.  He had to be autopsied.”

I felt like I had been punched. It took me a moment to be able to breathe but still…knowing he was in the same building was both comforting and unbearable.

“Oh.  Of course. I forget. Can I see him?”

“I say this honestly…you do not want to see him right now.  He’ll be ready for you to view tomorrow.”

As hard as it was, I knew he was right.

So, Thursday we went to the mortuary to dress him for the funeral on Friday.

This whole grief thing has been pretty tricky to figure out. I will probably deal with it my whole life, but at least I have finally realized some things about myself that have helped somewhat. I haven’t been doing well. There has been a lot going on this month and very little of it has been good. Adding Matthew’s anniversary to it has made me come undone a little.

I have had such kindness from so many. Loving words from people that I adore. That is what gets me through. Still…I have noticed this year quite a few remarks that have almost made me feel ashamed of myself for being grief-stricken during this anniversary. Like when my sister told a mutual acquaintance that I was struggling and they replied, “HOW long has it been?” Another person that read some of my writings about Matthew was surprised it had been almost five years because the way that I wrote made them think that it had happened very recently. I have news for people; sometimes it seems like it’s been a lifetime since he died and other moments it feels like only seconds have passed.

Helpful , well-meaning people have wanted me to look for “the good” on the day. The positive things about having Matthew in my life at all. Here is the thing. For starters, I am an extremely pessimistic person. Life has made me this way. I’m beyond a ‘glass is half-empty’ type of person. It’s more like, “There is no effing glass. The glass is all a freaking LIE.” So, looking at the positive is always a struggle for me, although I do usually try.

For another, I do this on other days. I think about the good times with Matthew a lot. On his birthday, we don’t even go to the cemetery. We take our kids out and to do something fun as a family and it is the same with most holidays. We talk about the things we love and remember about him and the joy he brought us. I’m just NOT able to do that on his anniversary. And believe me, I have tried.

After five years of puzzling it out, I have finally come to some reasons why this is. For one, Matthew died right as the season changes in full force. The changes in the visual aspects of the year are evident and the most difficult thing to deal with is the smell of the air. It changes from the warm, earthy smell of summer to the cold, smoky crisp of autumn and it always brings a flood of memories that slam into me with the first whiff of it.

But above everything, I think that it has to do with the sheer trauma of the situation.

Death IS trauma.

Even in best case scenarios, which I had.

And this time of year I am hit again and again and again by horrible, horrible, HORRIBLE mental images and memories. I have a clotting disorder. I have made peace with it but I know that at any moment, I could throw a clot and either be severely injured or killed by it. Grief is a bit similar. Sometimes you will be going about a very normal day and BAM!!!!!!!!!!!!!!!!!!!!!!!!!!!

It rears up and overwhelms you in the blink of an eye.

I also know that there are situations where I am more prone to clotting. Long periods of sitting or laying and during pregnancies. So, I am full or more dread during those times, preparing and bracing the best I can. I walk around, inject myself daily in the abdomen with heparin and wear compression socks. It is very like this time of year during the buildup to his anniversary. I brace myself for what is to come. I know that the chances of reliving the hell of it all is much more likely. I have done as much as I can to prepare and heal but it’s just like battening down the hatches and pray that I make it through the hurricane without too much damage.

I am VERY aware that for someone who has lost a child I had about the best possible circumstances you could have. Parents of dead children are all in this horrible club that nobody wants to be a part of and as far as that club is concerned I am a platinum member because my son had perhaps the easiest, gentlest death that is possible for a human to have.  I didn’t have to watch him suffer, he wasn’t maimed or tortured. He did not suffer. He literally went to sleep and didn’t wake up.

However, that doesn’t mean that it was easy.

No.

No, it wasn’t.

For a day-and-a-half I had been torturing myself with thoughts of my poor baby laying on a steel stretcher and laying in a refrigerated compartment.

I can’t tell you what that feels like.  To know your baby is laying on something harsh, hard and cold.

It seemed like I waited forever before I could get in to see Matthew and each second that ticked by made me more and more agitated until I was about ready to go nuclear over everyone and tell them to get the fuck out of the way because I was frantic, frantic, FRANTIC to GET TO MY BABY.

Before I was allowed in the funeral director told me, “He’s right through here and I want you to know that he has been laying on that table since he got here.”

I was confused until I saw Matthew.  He WAS on a gurney, but it wasn’t the cold steel contraption of my nightmares.  Have you ever heard of a pillow-top gurney? Well, this was one. The table was covered with a soft, puffy almost bean-bag-esque top that was soft and comfy and it made me break down and sob with relief.

It may not have mattered at ALL to Matthew, but it mattered to ME.

After my brain registered what he was laying, on I saw my boy.

My little bug.

My Matthew.

That minute was a mixture of some of the most intense feelings of my life.

There was relief.  I had never been away from Matthew for very long in his little life and so going that long without having him near me was unbearable.  I was seeing him again and the sheer relief of being physically near him overwhelming.

But.

Here is the thing.  Why I say that Thursday was the worst day of my life.

Because Wednesday was full of sedatives and a million decisions and running around and Tuesday was surreal. The sheer, physical SHOCK that I went into acted as a buffer in a way. Even though I watched him die. It didn’t seem real. Even though his body was starting to change when the funeral director took him away, he was still Matthew. My little bug.  Not too different than the sweet baby I tickled, nursed, cooed at, hugged, kissed, bathed and rocked to sleep eleventyhundred times.

Staring down at him on that gurney, he looked the same in many ways but so, so different.

In that horrible moment my body felt like every nerve ending in my body was doused in gasoline and set on fie and my mind screamed and howled and broke apart as IT SANK IN.

Sank in that he was dead and never, ever coming back.

It isn’t like I didn’t know that before, I did.  But it didn’t seem real.  None of it seemed real.  It seemed like any moment someone was going to say, “Wake the hell up, Loralee! You’re having a nightmare!”

Nothing will hammer reality in closer to home than seeing the effects of your baby’s skull being sawed in half, stuffed, and pieced back together by a staple gun.

He had been split in half and had his entire chest and torso opened up. The Y incision took up most of his body.

How’s that for something to think about in the dead of the night? The image and knowledge that your baby had literally been sawed in half, ripped open, stuffed and then stapled back together.

I always have a problem when I think of babies and little children that have surgeries.  Their skin is so delicate and fragile and the thought of cutting into it makes me shudder and cringe horribly.

I went to pick him up to dress him and he…crinkled.  You know, from the stuffing that filled the cavities of his body. His skin was harder and looked “set”. Almost like a doll. He didn’t smell right.  He still smelled somewhat like him but there were also medical smells tinged with formaldehyde mixed in.

To see my son in this state has left scars on my mind, soul and heart that I will never heal from.

I rarely sleep and never sleep well because I have the most godawful nightmares you can imagine. Flashbacks.  Anxiety attacks.  I suffered from PTS and had so much fallout from it that I am still suffering five years later.

I have just have more ability to stay quiet about it.

In fact, I really thought I would be able to write more about this.  I certainly set it up to write about mostly about “The most horrible day of my life”. I wanted to try and heal from some of that trauma and things that I saw but sitting here, I can’t do it.  I spent more time writing about the day he died than the day I went to the mortuary.

I guess maybe that is illustrative of how bad it was, huh?

Just know that there is more.  So much more that I don’t know if I’ll ever be able to write or speak of but I also know I will never, ever be able to forget it.  Maybe I should have just posted this photo instead of making you read all of this.  Like many of my photos of Matthew because we didn’t have a digital camera, It’s not the best photo. The quality is poor.  My sister is the way.  The lighting and exposure is bad, but it sums up that moment for me.

I just have to hope that one day it continues to get easier to bear.  And it has to a point. Just not this time of year. Not this week in particular.

So, you’ll have to forgive me for not being all sorts of giggles and kicks.   I’ll pull it together soon, I won’t leave this up for long and I do have a few light-hearted things to write about in mind.  I needed to write this. To get it out. I’m sorry it was so long.  It could have been much, much longer.

Please for all that is holy do not tell me to focus on the joy right now or look for the silver lining or make lemonade out of lemons, ok? I KNOW, ok? Really, I DO. And most other times of the year I DO.  I have WONDERFUL moments and memories of Matthew. Just not right now.

Let me have my grief for a bit.

Thank you for listening and being there.

I appreciate more than I can say.

You would have been five today.

Five.

It’s hard to believe that it has been so long since I was wearing unattractive maternity shirts and laying for hours in a hospital bed waiting for you to get here.

I loved you right from the start. My little man with bright red hair.

Your dad was pretty nuts about you, too. (Don’t ask about his hair. I have no idea to this day what THAT was all about.)

EVERYONE loved you to bits and pieces.

I should be spending this summer preparing you to start Kindergarten. Buying you school supplies and an orange backpack. Instead, I have a heavy feeling in my heart as I stare at my surroundings.

We left the only home you ever knew just over a week ago and I have no memories of you here in this new home. You never took a bath in any of these bathtubs, you never napped in any of these rooms.

I still have all your little things in boxes. They came with us.

I still carry your memory in my heart.

More than anything, I just wish you were here.

Our lives were ripped to pieces when you died and left us.

I’ve been putting it back together piece by piece (some days it still feels like I have millions of pieces to go) but it will never be the same. It’s like a piece of priceless pottery that has been broken and repaired. Even the finest and best repair is still just that-a repair.

It will never be put back the way it was before it was broken.

I did not handle your death well. No, not at ALL. It has been a very, very hard road to struggle down and I have had a difficult time just staying on it. I want you to know that your momma is doing ok. Slowly, it has gotten better. I’m doing better.

Some days I do feel lost. Sad. Broken. How could I not? I lost YOU. But, I also know that you would want me to keep going on the best that I can. I know you would want us all to be happy, even if you aren’t here with us.

So, I try.

I’ll keep trying.

Even if that trying really sucks on the scale of comparative success.

More than anything I want you to know what joy you brought to my life.

You made me so very, very happy, my sweet little one.

I didn’t have you nearly long enough.

I love you to bits, down to your sweet toes.

You will always, always be in my heart.

Love,

Your momma.