I Dreamed of You Last Night

I dreamed of you last night. 

I actually dreamed of you about a week ago, too, but it was different.

In the first dream, you were in the recovery area of the hospital (instead of the PICU) but you had already passed, and then you just woke up! It was actually a lot like I kept hoping for in those early hours of the 23rd. I kept waiting for you to move, your chest to rise, to come back to me. But you didn't. Not in "real life." In my dream a week ago, you did! I ran out and told the staff, and they were happy but it was almost if they had expected it. But you were still in the mortal body that I knew, the one that held you back and struggled. 

Last night was different. I think we were in a hospital then too, maybe. But you didn't have your g-tube, or trach, or any of the other "accessories" that were so much a part of your life here.  

You did have your smile, the one that would light up the room, and you laughed.  You sat and supported yourself. I held you like I would any other small child.  Your body was whole.  It was you, my son, and you were so happy, and so at peace. And you looked at me as if to say, "I know, Mom, I know you hurt, but I'm doing so great! I miss you. I love you." 

Oh my boy, I just held you and smiled, and loved the feel of you in my arms again. I even woke with a smile, and a sense of comfort that lasted for several hours.

Michael went back to school today and Daddy and I back to work for the first full week since you passed. Someone asked how I could be there. But the reality is, if I wait for the pain to fully heal, I will never work again in this life. I have faith that I will learn to live with your loss, but there will always be an Aaron-sized hole in my heart. 

My sweet angel.

I miss you. 

Please come visit again, soon.

“You know that place between sleep and awake, that place where you still remember dreaming? That’s where I’ll always love you. That’s where I’ll be waiting.”

Tinkerbell

My Son...

Oh Aaron,

We talked and laughed about you at dinner tonight, and I didn't cry. 

We recalled the time at church a man held out his fist for a bump and you turned away, and not two minutes later a teenage boy came by and you reached out to do stones with him. Oh, TJ razzed Brother Lindsley something fierce over that! And everyone laughed, including you.

There was the time newborn Linnaea was crying and you joined her. Except you weren't really crying, you were mimicking her and then pausing to see if we all realized how cute you were being. Twins, in stereo! Except you were a lot older and being goofy. 

Once when I needed a nap, I tasked Andrew with your care. He was trying to do something in the other room, but your pulse/ox kept going off. So he'd come check you and you'd be fine. He'd leave, and you'd alarm again. Checked on you and there was no problem. After several times, he left but peered around the corner to watch you reach down to your cord, yank on it until it alarmed, and then drop it as soon as he showed up. And you laughed. You may not have been verbal, but you sure did communicate! 

You were definitely a Ute fan. And. they beat BYU in football every time they met except once during your lifetime. When watching a BYU basketball game, it came down the the last buzzer and BYU pulled it off! (I can't remember who they were playing but it wasn't the U.) Your brothers were all hooping and hollering and you got excited too! Andrew looked at you and said, "You do realize that's BYU and not the U, right?" And you stopped cold and gave him the biggest stink eye. 

Oh my boy, you laughed a lot and you were happy, but I don't think many people realized you weren't just laughing to laugh. You had a snarky sense of humor. It will be so fun to get you together with your brothers in the next life and watch the shenanigans, 'cause I'm sure there will be some. 

Aaron, most of the time I do okay. I mean, you're free. How can I begrudge you the release from your frail body? But nights are still hard. I cleaned out your dresser and wardrobe yesterday and it was tender but okay for the most part. Then I found the hospital gown you wore last. That was all right, too, until I held it to my nose. 

It smells like you, still.  

When you passed, I dressed you in your shirt that says, "You are loved" but I worried that it might get lost between the hospital and mortuary so we took it off before we left. But I couldn't leave you without clothes on, so I went one last time to the cupboard where the hospital gowns are and chose the brightest one I could find for you. And it was still on you when we went to dress you for your services. 

Oh my baby... 

I still wake between 1:30 and 2 am each night thinking about you. It's quiet and dark, and I no longer sleep in my office.  Your dresser is going downstairs for your new nephew who will be joining the family in the next week or so. 

Are you playing with him and your other nephew coming a few months later? Are you exchanging notes and ideas? Do you and they know how much we love you all? Do you get to bring them to their mamas? 

My little man, tomorrow school starts again, and you won't be here. 

I miss you. How does the world keep on turning without you? 

Grief is love expressed in tears. 

~Terri Guillemets

There's Snow on your Grave

Two weeks ago about 5 am, I left the hospital as a mom for the last time, without you, left you behind. (How does that sentence even exist?) Joseph and Sarah had gone earlier with your wheelchair and your minivan. I cannot say how much that meant to me. I was already broken. Steering your empty chair out and securing it in the car was more than I could bear. 

One week ago, I placed your weighted blanket over you one last time and Daddy and I closed your casket. 

Today, we took flowers to your site. It snowed yesterday and when we got there, most of the previous ones were covered with snow, with small pieces peeking out through the white blanket. But the spray at the head of your place was still standing. I worried that it would have been blown over. 

Holli came by today with some of your school things. She misses you so much, too. She cared for you for more than seven years, at your side at school and then at home when I was at work or school. She was so much more than your nurse, more like a bonus mom.

There is so little I can still do for you, but I can place flowers so your grave is beautiful. 

Tonight, Daddy and I started working on your headstone. I want it to be perfect, to reflect your joy and our love for you.

Love you, my little man. I miss you. 

“Tears are words that need to be written” 

~ Paulo Coelho

Two Weeks: Both a Moment and an Eternity

Two weeks.

How has it been two weeks already?

And yet, only two weeks?

It seems like both yesterday and forever. 

This was my view two weeks ago tonight when I went to sleep only to be wakened less than two hours later.

And I won't sleep here ever again.

Who would have thought I would miss it? That "bed" where I spent so many, many nights over the last 13 1/2 years. 

I guess if I had let myself think about it, I would have known I would miss it. But I wouldn't, couldn't go there.

And now, I am here. 

My little boy. You closed your eyes in this world and woke up in a beautiful place, surrounded by family and friends.  

Today I packed up your blankets and a bunch of other things that I had already stored haphazardly. I had these plans to get a bunch of things done, but I find that I can't. I don't want to push on through. So I do a little and decide that I'm going to sit and feel, and hurt. But in acknowledging that pain, that struggle, I give credence to my love for you and all that you mean to me. You are worth taking the time to remember, to reminisce over. Today I found the tiny blanket Gramma crocheted when you were first born, and the bigger one she made a little later. I caressed the two soft blankets Aunt Chelle made and outlined your newborn footprint a friend put on another blanket.

It's so cold outside, snowy and cold. I know that's just your body out there, but still, I buried you with the last weighted blanket I made for you, the one that says, "I love you" over and over and over again on it. It helps me to have it with you. 

Be happy and warm, run and play. 

I love you.

"I have to say that although it broke my heart, I was, and still am, glad I was there."

Markus Zusak - The Book Thief

 

12 Days...

I don't know that I'll be sharing this as much on my personal Facebook timeline. I'll always share it on Aaron's page, but that's because it's his. I don't know that everyone wants to be hit with my grief as often as I feel the need to write. But as always, you're welcome to join me if you'd like. Honestly, the comments and reactions have been healing for me. I think one of my biggest fears is that he will be forgotten. Seeing his impact on others helps mitigate the pain. 

How has it been almost two weeks? 

Tomorrow night it will have been two weeks since I last saw your eyes open, your smile, you waving your arm. 

How can it be so long, and yet, feel like it just barely happened?

I went back to work yesterday, and again today.  And it was hard. I mean, how does the world just keep moving on? Clients ask how Christmas was, and I just say it was "good, peaceful." It was. It was actually too peaceful. Too quiet. And the day goes "okay" but exhausting. It's hard listening and helping them process but I think I'm managing. 

And then I leave to come home. Frankly, yesterday I really didn't want to, and today was rough, too. In the past I've always been watching the clock, making sure that I was aware of the time and if I couldn't get notes or things done, I've left and just done them at home. But now, now there's no hurry, not really. Maybe there should be. William and Michael are also important, but they are also fairly self-sufficient. There's no one to sign out. No meds to give. 

I'm actually really glad I've got three days of online training starting tomorrow. If I don't leave the house, I won't need to come back home. 

Your room is starting to look a little empty. I've moved out most of the medical equipment, including your wheelchair and that hated lift. Maybe "hated" is too strong a word. Maybe "ignored" is better. After all, it pretty much sat in the corner, just taking up space and being used to hang blankets on. 

I'm slowly going through the process of setting things aside. I began with all your medical supplies. I was angry, angry that all the "things" I had accumulated that were supposed to keep you here had failed. Angry that they still were in my home, and you were not. I moved on with your rented equipment because somehow insurance didn't seem to think they needed to keep paying for machines that weren't being used anymore. And now I'm mostly setting aside the rest of your things: your blankets, clothes, and so on. Those aren't going anywhere yet. I don't know if they will. I'd love to make them into stuffed animals or something to hold close, but that's a job for another time. 

Oh, my love... How can you be gone? 

Today I had a long talk with the attending who was on when you passed. It was good, healing, therapeutic. You had an amazing team that took care of you, that loved you, and your passing has influenced them as well. She asked how I was doing and I said, "good, okay, mostly." I only break down a few times a day right now, but that might be because I'm staying busy. 

Yesterday I pulled my hospital parent badge out of my backpack. It's one of those things that smacks you upside the head. It's always just "been there," waiting for the next time it was needed. I reached in for something and caught the lanyard by accident, and realized I will never use it again. I will never be a parent at Primary's, ever again. I don't need to carry it "just in case." 

Aaron, I miss you. I know you're whole and free, but I hope you miss me, too. Is that selfish? Maybe, but it's true.  You brought out the best in me, and now I'm struggling to figure out how to go on. 

I still have the sign I made that says, "Breathe." How do you breathe when every breath hurts?

"When one person is missing the whole world seems empty."— Pat Schweibert

I Love You, My Son. I Miss You.

My sweet boy...

Today your brothers carried you for the last time. It was just you and them. My heart swelled, and broke, and also healed a tiny bit watching your six big brothers who've watched over you, played with you, teased you and been teased in return carry you to your resting place. 

These are the boys who you threw pies at. Now young men, they were strong and yet tender as they laid the casket in its place. Each one loves you so much. You taught them, and me and dad, and your sisters. You taught us grace under pressure, forgiveness in pain, trust and hope in spite of trouble. 

I've carried a stone heart in my pocket since you passed, but today I couldn't find it at the cemetery. (Turns out it was tucked down in a corner of my purse.)  Mary handed me a heart that we'd made many years ago for Valentines and passed out. It was a cloth heart, designed to be warmed up to keep hands warm. Deborah sat with Linnaea. Daddy dedicated your grave. Other family was there as well. 

My son. You took this broken family and brought us together. I am so grateful for you.

It's still not easy, but I do find myself smiling through the tears, at least sometimes. I suspect it will be that way for a long, long time, maybe until I get to come join you. 

I took the Christmas decorations down yesterday. I mean, it was January 1st. But I also didn't want to do that today as well as your services. Somehow, I figured that it would be no big deal to put those away.

I was wrong, so very wrong. It was almost like losing you all over again. Your sweet ornaments with your pictures. The snowman I chose 13 years ago for your first ornament because it was entitled "One of a Kind," just like you.  All the angel ornaments, and the one from a couple years ago with the bell and the pair of angel wings. So very many memories. 

I miss you.

Somehow, I don't think that part will ever change.

I love you, my son. 

“Grief is love with no place to go”

― Karen Gibbs

December 23rd, 12:20 am

I need to write about his last hours.

I need to be able to see it, process it, try to make sense of it. 

I mean, it does make sense, except in my heart. 

In my heart, well, nothing makes sense at all.

December 22nd was our 34th anniversary (yeah, we're old). I had planned to not go home that day but to go home on the 23rd because candy cane sleds were on the schedule. And then the 24th for Christmas Eve dinner and a few hours on Christmas. But then I decided that if I could watch the candy cane sleds, that would be enough and I wanted to see William on our anniversary.

And things were looking "okay." I mean, they weren't great, but we were making progress on his nitric, his vent settings, sedatives, etc. We'd gone from three IV "brains" down to one. He was off one sedative and almost off the other. Nitric was minimal and almost off. He'd fevered off and on, but that wasn't anything new.

But something nagged at me. I kept looking at him and looking at the Facebook memories that were coming up. And the thought that I'd had for some time that maybe it was time to pull back on some of the interventions. I really didn't know what that looked like, but the more I thought, the more I knew I didn't want chest compressions if his heart were to stop.  I mean, the chances of it working were slim to none, and if somehow it did, he would be trying to recover through broken ribs, where every single already difficult breath would be compounded by intense pain. But I'm not his only parent, so I needed to talk to William.

At home, I brought it up, and he wasn't sure, which was fine. I mean, I'd been thinking about it for a couple days, but it hadn't crossed his mind yet. However, as we were talking again after dinner, I felt an urgency to get back to Primary's. Before I left, he told me he agreed: that was too much to expect of Aaron.

Now, there's a real, tangible fear among parents of medically fragile kids that doctors might not do everything they would for our kids that they would for a typical kid. I haven't seen that response from our teams, but still, it's there. So I figured that once I got back, I'd find one of the doctors I had a long-standing relationship with and talk with them, except that's not what happened.

The team was rounding just about five minutes after I got back about 9:30 pm. We finished with the plan to pretty much stay the course. He had popped a pretty high fever: 105, but then it came down and was lower than normal. (That did make me worry a bit.) They had restarted norepi (similar to epi) because his blood pressures were a bit lower than they wanted, but overall, the plan was for no changes. And then I found myself speaking up. 

"We need to revisit his code status. I don't want chest compressions. Those are off the table."

There was a sigh, and the gentle comment that she felt that was a very compassionate decision, and I tried not to tear up. I had just given permission for my child's heart to stop, and the team to not try to start it again. 

Shortly after, I told him goodnight and I loved him, and went to bed. 

The nurse woke me at midnight to tell me they were restarting epi as well because his blood pressures were still kinda low. And they were, sorta, kinda, but still within what we see at home pretty often. 

Except epi didn't do anything. 

They went lower.

They called the team who brought in an ultrasound and a quick-acting paralytic. 

I got up and stood at his head, smoothing his hair and talking to him. 

The attending was also now at bedside and they told me they could make room for me by his side, but I didn't want to do anything that would get in their way at all, so I stayed.

When they called for epi-spritzers, the attending told me to come to his side and I did.

I saw the monitor. It wasn't good.

She called for pharmacy and code epi.

I watched his numbers go down farther.

I don't remember what all they were, but I watched his heart rate slow, and slow some more.

50's, 40's...

I asked if we were losing him.

She told me he was going. 

And they pushed more code epi. 

I don't know how much, I know it was several times. It did nothing at all. It was like they were pushing saline.  His heart was done. 

I watched the wave patterns and in my shock or naivete I thought there was something wrong with the way the leads were placed because there wasn't much in the way of peaks and valleys. 

No, it wasn't the leads, it was his heart.

It continued to slow. Her hand was on his wrist and I heard her say she couldn't feel pulses. She put on the stethoscope and listened.

There was nothing.

He was gone. 

I still can't believe it. It seems so surreal. He was still warm, still colored. I was gripping his hand, smoothing his hair, kissing his face. They said he was gone, and I just didn't understand.  I kept waiting for him to move, to come back.

It had been 20 minutes since the nurse woke me. 

It was as if a feather had fallen from the sky, slowly floating to the ground and then was still. 

I was shattered, but he was at peace. His heart stopped; they disconnected the vent. There was no struggle, no pain, no fear. Just peace. For him at least. 

It was the same attending that had been present back in February of 2022 whcn I told her I didn't think that was "it" but if he was going and I didn't see it, she had to tell me. I was right then. And I knew this time, too. When I asked, it was a plea for contradiction to what I felt, not a question I didn't already know the answer to.  

Oh, my baby... 

This hurts.

It hurts so bad.

Tomorrow we bury you, because the cemetery was closed for the holiday weekend. How am I supposed to walk away and leave you there, alone? 

It's 2024, and it's a year that doesn't know you. I don't know how to put you in the ground and leave. Everyone is saying "Happy New Year" and I just want to go back to last year. I know you stayed as long as you could. You are an amazing, valiant warrior and I am so privileged to be your mom. But please forgive me if I wish you were still here. 

I'm glad you're free. There are no more IV's, PICC lines, sedatives. No more sitting on the sideline watching others run and play. But I miss you. 

And I don't quite understand how the world is still moving forward without you here. 

“Memories saturate my heart and the story of you spills from my eyes."

—Grace Andren