Thursday, April 11, 2024

Ignorance is Bliss?

Aaron & Linnaea May 2023
Hi Aaron,

Tonight I picked up Linnaea again from ballroom practice and brought her home, and we stopped by the cemetery. She asked why, and I told her it was so I could tell you goodnight. 

She thought we would see you. I so wish...

She asked where you were, so I told her that your body was there, but your spirit, the real part of you, was with Heavenly Father and Jesus in heaven. 

The next question?

"Where's heaven?"

Oh baby, I wish I knew, I really do. And when I told her I didn't know, she said she didn't either. She asked when we would see you again, and I had to tell her not for a long, long, long time.

I did tell her that They love you even more than we do, and that's a whole lot! And then I silently cried because I needed to not upset her. She is so innocent and just took it all in. I envy her faith and trust.

I was looking back today at some of my older posts, trying to find some information for another mama, and was struck anew with how miraculous your life was. And how precarious. And how I truly had no clue.

So many times...

So close...

And I honestly had no idea. Or maybe it's because it wasn't your time yet. 

In looking back, I found where I asked Daddy if it was strange that every Thanksgiving I wondered if we would still have you here for Christmas. That was back in 2018, and I remember every single year that thought went through my mind. 

Except 2023.

Oh, the hubris...

When we went in on the night of the 9th and your viral panel came back positive for Flu A, I figured maybe five days in the hospital, well before Christmas. And then the 13th hit and I realized it wasn't going to be quite that quick, but still, it would happen. 

Even on the night of the 22nd, I was pretty sure that even though we would celebrate Christmas in the hospital (again), we would be home by the 26th or 27th at the latest.

The 26th found Daddy and I at the mortuary choosing your casket, determining your resting place, buying burial clothes.  The 27th I cleaned out all of your medical supplies and sent them away. And the 28th, the day I was sure you would be home by, we dressed you one last time.

Oh Aaron, the last two days were actually pretty good ones. But today, oh today...

I was doing okay, returned your stone and flowers to the cemetery and went to work. And then I saw the news reporting a possible active shooter situation at SUU, you know, where Sarah and Joseph are, and my heart stopped again. I grabbed my phone, fumbled to open it to text them, and then saw Joseph's text that they weren't on campus and were safe.

But Aaron, for those few seconds... 

I now know what it is like to lose a child, to bury my baby. Just ... just no. 

And then going by to tell you goodnight.

Goodnight, my son. 

I love you.

Miss you.

"Ignorance is bliss. I wish I still had some."

- Adam Pascal 

Tuesday, April 9, 2024

The Feels...

Hey kiddo,

I stopped by Westlake today and picked up Linnaea. It's concert week which means Deborah is tied up there until late every night and Linnaea isn't nearly as much help as she thinks she is. Since I work just down the road on Tuesday and Thursday, I go back after and rescue both of them. 😉

But anyway, she missed her mom almost immediately and was sad on the way home, so I handed her my stuffies from my dashboard, plus the two that don't fit and are kept in the glovebox. 

They kept her busy for a little while. But then we talked about feelings. I told her it was okay to be sad, because when we miss someone it's because we love them. And when we're sad, we cry. She asked where my mom was (because that's her frame of reference, that's who she was missing) and I told her my mom is all the way in Arizona, and I miss her. And I miss you. She said she missed you, too, and her mom, and her dad and Barrett 'cause they're a family and are supposed to be together.

Yeah, families are supposed to be together. And I have faith that we will be. 

Today was an "okay" kind of day, Aaron. Getting going was a little rough, but no rougher than it has been and not as bad as many days. I was worried about taking her to the cemetery to pick up your things tonight; I worried about how she would take it.

But it didn't seem to phase her at all. She helped gather your things, and then she wanted to gather them for other people. Oops! I persuaded her that we needed to just do yours. She really was pretty matter of fact, like she was when she asked "where are we" when your room was cleaned out. 

We are so blessed to have her in our life, and Barrett and Elend. And I'm so excited for your next nephew to come, but hopefully a few more weeks away. 

I'm trying to be open to my feelings. There's grief and pain, but also comfort and sometimes glimmers of joy. They kinda all get mashed together: joy and hope and sorrow and wonder and anger and love and maybe even excitement (sometimes). 

I miss you, kiddo. I miss you so much. It's very strange to pick up your stone and flowers from the cemetery and put it in my car. When I look back, it is so bare. And honestly, there aren't a lot of stones right by you anyway. The plots have been purchased but not needed yet. 

It comes in waves, Aaron. Saturday was hard, Sunday was okay. Yesterday I completely broke down and lost it. And today, it's not as bad, at least yet. 

I'm starting to find my sea legs; I don't like it, but I'm learning to live with it anyway. I mean, it's not like there's really another option. I hope you're looking down and know how much you're loved. My precious, precious child. I love you.

“Often the test of courage is not to die but to live.”

– Conte Vittorio Alfieri

Sunday, April 7, 2024

General Conference 2024

April 2021 Conference
Hey Aaron,

It's Conference weekend, and it was strange this year, kinda like everything is lately, since you left.  

I look at other pictures, back through the years, and so many times we had blankets spread all over the carpet to protect it from sticky finger and greasy popcorn. The room was (relatively) crowded. This year it was pretty much Daddy, Michael and me, plus sometimes the dogs. No blankets, no Conference bingo, no wheelchair, no beeping...

It was hard to pay attention, somehow. I kept going back in time to when I would get up during the intermediary hymn to get your food, or do your treatments, or whatever. 

Or the several times we were in the hospital, in the PICU, and I would miss talks because it was time for rounds, or specialist visits or, I don't know, something...  

I need to get back to the temple. I haven't been since the day we dressed you, and for so long before I didn't dare go anywhere I had to turn off my phone. I need that comfort, that guidance. 

This new freedom still seems strange. 

This week is concert week for Westlake ballroom so I'll go by and pick up Linnaea on Tuesday and Thursday, and she'll hang out with me on Wednesday because I don't work that day. Deborah said she'd try to pay attention to her phone so I didn't have to come in, and I reminded her that I don't have to get home to sign anyone out...

April 2011 Conference

Aaron, I didn't think I really had any "what ifs" regarding you. When you left, I took it on faith that it went the way it was supposed to go. But lately, they've plagued me. So I cling to the promise that you would be here until your mission was fulfilled. I have to. And I'm working on changing those "what ifs" to "even ifs". 

I'm trying, really I am. And sometimes I do okay, maybe even good. But then it seems to bubble up again and I'm just, well, something... 

Here's what I wrote while I was trying to listen and take notes today:

This is hard, my whole body hurts (probably from sitting on the couch all day yesterday). It seems weird to not be needing to do so many things for you in between conference sessions, or even during. This is the 26th conference since you were born and it is the first time you're not here. I feel sluggish. I try to listen but am distracted. I just want to crawl back in bed. But I'm trying, I'm listening, trying to be where I can to recieve help.

A couple things that stood out to me were that He knows me, knows my pain, and wants to bless me. Miracles have not ceased and there are angels among us (are you one of them?). And by consistent effort, even slow effort, I can maintain momentum and not be completely at the mercy of the waves that seek to pull me under.

So I will. I will keep trying. And I will keep acknowledging when it's hard, 'cause it is hard! Those feelings are important, and I believe that my grief is due to my love for you. But while it will not "go away", I can grow in it and through it and around it. So I'll keep moving forward.

I mean, what other choice really is there?

"When we trust God and His love for us,
even our greatest heartbreaks can in the end work together for our good."

- Gerrit W. Gong 

 

Friday, April 5, 2024

Friday into Saturday Again...

Friday into Saturday.

Again.

Without you.

I've actually been able to talk about you, and my grief, lately and not break down. But somehow, somehow my body seems to know when it's time again.

I find dread starting to creep in on Thursday evening. 

And then it hovers in the wings Friday morning.

I do manage to go to work and set it aside. After all, it's my story, not my clients' and they deserve my full attention.

But then the trip home on Fridays always seems so dark, even though the sun is out. There are nights I can make it home without crying, or at least without sobbing. Not on Fridays.

Tonight Daddy and I watched Maleficent: Mistress of Evil. A fun show, it's been way too long since I saw it to remember everything.

I forgot that she dies and Aurora is heartbroken. Those sobs, that anguish...  And I was right back at your bedside again.

Tomorrow is General Conference, Aaron. How many times over the years did we watch from the hospital? Usually the PICU? I really don't know. But we also were home for many of them, and each time I tried to get a picture of you watching. You especially loved the music. Sometimes I wrote about it, like when I reflected on listening to the choir sing, "My Life is a Gift" from your PICU room, and how your life was, is, a gift, a precious one.  

But recently I found a post that I started but never finished. Do you remember how I would take notes, in large part to help me focus? Well, here's the only part I got down from that time:

 "Mortality is only the second act of a three-act play.  The atonement covers all unfairness in life." 

 I'm pretty sure it's not an exact quote, but oh, it speaks to me. I'm grateful I wrote it down whenever it was because now I cling to it. 

I love you so much. Miss you dreadfully.

The leaves of memory seemed to make
A mournful rustling in the dark.
~Henry Wadsworth Longfellow 



Wednesday, April 3, 2024

Another New Month...

Hey Aaron, it's April.

Actually April 3rd. April 2nd I went to your spot and picked up your things so that they could mow and clean up the cemetery. It looked so bare, but then I decided to leave the flowers Mary had brought. I know by now they're gone, but they were looking a bit ragged anyway, and I just couldn't leave it with nothing there at all. 

Tomorrow I'll take your things back again. I now have an alarm set for 6:30 pm every Tuesday that says "cemetery" because I don't want to even chance forgetting to pick them up and losing them forever. 

Oh, kiddo...

It almost felt like a really bad April Fool's joke, with the joke being on me, 'cause you're not here. 

Yesterday I also went up to Primary's. I've been twice before but once was to meetings over in the clinic building, in a part that you never went to, and the other to a meeting in the main hospital but again, in an auditorium that you never saw. 

Yesterday I went to see someone in the PICU. It was the overflow section, so not where you left, but in the room you were in before you became so critical. It actually wasn't as hard as I thought it would be, but it still seemed strange to walk onto the unit. 

And because it was the overflow, I didn't have to call in to be admitted. I just walked in and back there. But that wasn't you in the bed this time. I think I did startle a few people. They were rounding just after I got there, and then pulmonology came by. Both times I just kinda sat back in the corner. After all, it wasn't my child this time. 

And the mama, my friend, well, she's pretty awesome. She's just starting the trach part of their journey, and together, she and her girl are going to rock it! I took her some of your old (unused) trachs so her kids could play with them and she could do "surgery" on a doll for her daughter. 

Do you remember when we trached Bunny? And how many times you decannulated him? And how I freaked out until I realized it wasn't "your" trach you were holding or had thrown on the floor? I think you thought that was pretty funny. I also think I can credit you with more than a few of my (now many) gray hairs. 

Today Mary, Michael and I went to the Manti Temple open house. It was beautiful, and not something we could have really done with you. It is very much not wheelchair accessible. Plus, we stood in the sun for about two hours waiting to get in. I'm grateful we had the opportunity, and I also remember taking you to the Saratoga Springs open house. And the Provo City Center one. But while I just enjoyed being with you in Provo, in Saratoga I felt the whisperings of the end. As we sat in the Celestial room there, I remember thinking this would be the last time I got to be in a temple with you. And it was. 

Oh, Aaron, I feel so selfish. Your time here is done, and I'm now much more able to be present for your brother, but I still miss you so much, on a visceral level, a deep celular part of me hurts. 

I've heard that when a mother carries a child, there is a transfer of some of the fetal cells so that forever after, her body carries part of the child. So does that mean that the umbilical cord is never truly severed? And is that why I feel like part of me is now missing, lost, gone and I ache to find you? 

You know, I learned the other day that in February, plots in our little cemetery went up significantly. When I mentioned that to Daddy, he replied that he would have gladly paid the difference if that meant you had been here just three more months.

Me too, little man, me too. 

But it would not have been fair to you. Your body was so tired, your soul so weary. You  fought for so long and you deserve to rest.  I just wish I could convince my heart of this. 


BEFORE
In my before,
I would have never imagined
grief to be such a 
penetrating experience.

But today, I know better.
Your absence is felt on a cellular level.

Franchesca Cox

Monday, April 1, 2024

The Power of Music

Aaron, I was home alone tonight for quite a while. Michael left for work before I got home, and Daddy was working late.

And I was missing you (so what else is new?). 

So I watched your vidoes, the one from your funeral, and the 5000 days one.  Between the music and your smiles.... 

Kiddo, you have the best smiles, just like your brothers and sisters. And the same mischievous looks. I can only imagine the hijinks you guys would have gotten up to had you been more mobile. As it was, you teased them pretty good, especially Michael.

You would have missed him so badly when he left for his mission if you were still here. But I guess this way, maybe you get to go with him instead?

So after I watched the videos (and cried some), I started looking at the piano. I really haven't played much in so, so long, and yet you loved music. You got so excited every time music therapy showed up.

So I found my piano music and sat down. It was pretty rough, I won't lie. I was glad there was no one around to hear it.  But before I stopped, I pulled out Beethoven's Moonlight Sonata. I haven't played that one in years, maybe over 20, and not much even then since high school, more than 35 years ago. Guess what kiddo? It was okay.  I mean, it was a bit off, but the muscle memory was definitely still there. And it felt good.

Maybe I need to do this more. 

Do you listen to music in heaven? Do you sing and rejoice? Do you miss me, too? I can't wait to sing with you someday.

I love you, kiddo.

Miss you, too. 


"In some music, one hears the metronome of the soul."
~Dr. Idel Dreimer

Sunday, March 31, 2024

Easter Sunday

As I sit here on Easter morning, I am humbled, overwhelmed, devastated, and yet hopeful. 

Somehow I thought I understood Easter before, and maybe I did, in the same way that a third grader learning to do multiplication and division understands combining numbers. Or maybe more like a much younger child adding and subtracting. 

I'm sure I'm nowhere near the level of a graduate student.

But maybe I'm beginning to really learn...

Oh, Aaron, I cling to the Resurrection, the joy of Easter, the rising of Christ, the hope of eternal life, and to seeing you, holding you again.

It's quiet here, soft music playing and the heater blowing, but nothing else right now. Everyone else sleeps and I sit by the window waiting for the sun to rise. It's cold, snowy, not much like what stories and greeting cards portray. But it's Easter just the same, Easter Rocky Mountain, crazy Utah style.

And grief is not what I expected either. I knew, academically, that it was hard and long and . . . well, something. But somehow I thought that knowing this was coming for so long, studying and learning, I'd be better equipped in some what to handle it. Reading about soul-wrenching, gut-aching pain is very different than experiencing it.

But I know He knows, and He knew, and He has been through it in ways that I simply cannot (nor wish to) imagine. And He holds me, and you. 

Bit by bit, the sky grows lighter. Each Easter I look up what time the sun rises, hoping to catch it. And each year I remember that it comes later than I've learned. We are so close to the mountains on the east that the shadows last longer than expected. So I sit, and I ponder and pray, and wait, much like I wait for comfort, for relief, even for you. 

Growth is hard! It stretches, molds, hurts, but I have faith that it makes me more than I am. 

Happy Easter, Aaron.

He is risen, risen indeed. 


Easter morning 2023

But there is a resurrection, therefore the grave hath no victory,
and the sting of 
death is swallowed up in Christ.


Saturday, March 30, 2024

Saturday

It's raining.

I'm sitting in your room, or what used to be your room listening to the raindrops pattering on the roof, on the ground. 

It's quiet, peaceful in here, the candles glowing, the lamp lit. And so very dark outside.

Tomorrow is Easter, and I'm missing you. 

Today Linnaea and Elend hunted Easter eggs in the backyard; the joy and wonder on their faces was beautiful to see. As I watched understanding dawn on Elend's face, I was reminded of you shaking eggs with jelly beans in them, loving the rattling sound. 

Linnaea was so excited to find the eggs she colored that she would (sorta gently) toss them into the basket I had. I laughed, and made egg salad tonight with all the cracked ones. She helped peel them, too. 

Spring. New life. New hope. 

Oh, Aaron....

Did the disciples and His followers despair on Saturday? Did they wonder if everything was hopeless? Did the cry out in pain? What it must have been like for them, so hard. Was their agony also almost unbearable?

I am so grateful for the memories of you, the resurrection, for being able to see you again. But oh, tonight it seems so very, very far away and the memories seem illusions. 

I miss you....

"Memory is time folding back on itself."

~Garth Stein

Friday, March 29, 2024

Good Friday

Dear Aaron,

It's Good Friday. In the ultimate scheme of things, it really was a good Friday. 

But I can't help but imagine it didn't seem that way at the time. The agony, the sense of hopelessness, the abject sorrow of those who loved Him when He died.

I know my own pain, my own grief, but that is tempered by His sacrifice and the knowledge that I will see you again. On Friday, they didn't have that. They didn't know, they didn't understand. Not yet. 

As I drove past your grave tonight, I thought of that. Without the knowledge of the resurrection, I don't know that I could go on. I cling to it. 

Last year for Easter, we wrote about Jesus and put the thoughts inside plastic eggs and then read them on Easter Sunday. Two in particular caught at my heart: "Jesus makes me all better" from Linnaea, and "The tomb is empty."

On Friday, the tomb was very much not empty, and they didn't understand that it would be. Tonight, your grave is also not empty. But someday, because His tomb is, yours will be, too. 

That will be a glorious day. 

I will see you run, play, jump, dance, sing, and maybe even enjoy ice cream. 

And my own heart will be whole again.

Love you.

Miss you.

"Unless there is a Good Friday in your life, there can be no Easter Sunday."

Fulton J. Sheen

Thursday, March 28, 2024

Blessings

Hey kiddo,

It's just one of those days. 

I go to work, and I think I'm doing okay there. I do my best and I seem all right. 

But I feel drained when I leave, like I'm slogging through the mud, and it's almost more than I can do to put one foot in front of the other.

I get in the car, and well, coming home today was hard again (or still?). 

It's been such a dreary, dark,  cold, gloomy day. Did the weather match itself to my mood, or was my mood influenced by the weather? Who knows. I just know I was freezing, both inside and out.

When I got here, there was a package from my sweet sister-in-law with a note. She said that when she packed up Christmas, there were a few things she couldn't bear to put away, so she sent them to me with "hugs from heaven." 

How could she have known? 

When I stopped by your grave today, I tried to see you. I couldn't. You seemed so far away. 

But she reminded me. 

Cards with "Joy" on the front, a metal sign "Joy" and a heart-shaped keyring, some silk pansies. 

You, my boy, you embodied JOY.  I needed the reminder.  

So I will try to smile through the tears, and hold your memory close.  After all, you are "Compatible With Joy."

Such a blessing to so many, to me.

I love you.

Miss you, too.

Love,
Mama 

  • "Blessed is the influence of one true, loving human soul on another."
    – George Eliot

Wednesday, March 27, 2024

Michael's Call

Dear Aaron,

Michael's call came. I'm feeling kinda emotional about this. He's the last one, and each has been a little harder to let go than the one before.

The Arkansas Bentonville mission is getting one of the very best.  Actually, maybe two of the very best.



Will you be there? I somehow feel that wherever he is, he'll be in a trio because you'll be by his side. You two really grew up together. He doesn't remember life before you, not really. He wasn't even four years old yet when you were born.

And as he grew, he learned so much about how to take care of you. Honestly, he was one of your very best caregivers. He just "knew" what you needed. He was also an incredible support for me, too. There were nights he would take over, staying up as long as he could, so I could sleep in my own bed and not have to get up to do meds and treatments. He would usually make it until 5:30 or 6 am, and then go crash in his room, but that gave me the rest I needed to keep going on.

He would play with you, read you stories. He knew how to change your trach, do your meds, feedings; pretty much everything. 

Will you now take care of him? 

I know he'll be an incredible missionary. Please be by his side. 

“Our loved ones who have passed on are not far from us.”
Ezra Taft Benson






Tuesday, March 26, 2024

Dear Aaron

Dear Aaron,

Tonight as I drove home, a blanket of clouds covered our mountains. I come from the west side of the valley, and it was sunny there. But as I looked towards home, to the mountains that gently wrap around you, and our home, I couldn't see
them. And a little to the south, they were dark, ominous. 

As I approached Alpine, and the snow started to hit the windshield, I saw two flocks of small birds, dipping and flying for nearby trees.  

Yeah, spring didn't stick around long before giving way to winter again. As I look out the window right now, there are big fluffy snowflakes falling. It's pretty, I guess, but it was prettier in December than at the end of March. 


I can't help feeling there's many metaphors in here for grief. I know I can feel comfort, and even glimpses of joy, but then the clouds come again, the winds buffet, and I am left searching for refuge. 

Like I know my mountains are somewhere behind the storm, I know you're at peace, healed, whole, but I can't see you.

I did dream about you last night, and it was wonderful. Kinda like my first two dreams, you had passed but then were alive again. Except this time, you died, lived, died and lived again, and I knew in my dream it a was a matter of time before you would be gone for good, but we were given a reprieve. 

I mean, it's what happened in real life, really. I just didn't realize it at the time. As I looked back through my notes trying to find information for another trisomy mama, I looked again at your numbers over the past two years, especially when you were so very critical. It had to have been the power of faith and prayer that kept you here, and frankly, I'm grateful for it. I have been fully transparent this whole journey that I am a greedy person. I wanted every single minute of your life, and then more.  

Today my sweet friend sent me the album of pictures from your services. Oh, Aaron, I'm so grateful for them, and felt the pain again knife through me. What a precious gift she has given us all. 

All the friends and family who came to see you and us, the pictures of closing the casket and our last glimpses of you, your brothers tenderly carrying you to your resting place... 

All the memories...

Oh my son, my dear, dear son. 

What a treasure you are. 

“Memory is not what the heart desires. That is only a mirror.”
— Gimli


Monday, March 25, 2024

My Son

Hi Aaron,

I'm sitting here in a (mostly) empty house (the dogs are here) listening to a piece called, "When David Heard". It's about when King David heard that his son Absolom had died, but it was written for a man whose son had been killed in an auto accident.

It goes through so much of the grief process, the denial, bargaining, depression, intense sorrow, and I guess, acceptance to a degree. 

It is a father crying out for their child that isn't here anymore.

It rips at me.

Oh, my son...

Will I always feel this tearing in my soul?

I'm looking back at blog posts, trying to find information for another mom, and I can see it now so clearly. You were tired, so tired. You fought for so long. And yet, I don't think we did "to" you, really I don't. 

In fact, when I spoke with the attending who had been with us the night you left, she told me about seeing you leave the unit the previous time, just a few weeks earlier, seeing your smile, your joy. She said she would hold that image in her heart. The sight of you being happy, loving life. 

You know, I actually made it home today, even driving past your grave, without crying. But then now...

I love you, Aaron. This pain born of suffering, I know I will grow, will learn, will progress. But oh, right now, it hurts. 

“I almost didn’t cry today until the memories of you found me,
unraveling my heart again piece by piece, reminding me why I still do
…Every day"
Amelia Lynn


Sunday, March 24, 2024

Palm Sunday

Hey Aaron,

It's Palm Sunday, the beginning of the end of Christ's mortal ministry. 

In some ways, I've been dreading Easter this year. Does that seem strange? But tonight Michael and I went to a Palm Sunday fireside and I actually felt something besides pain. I felt hope, maybe true hope for the first time in over three months. 

I mean, I know it's been there, but not so much in regards to you. I've laughed and had fun, I've smiled, I've felt positive emotions, and lots of comfort along with the crippling pain. 

Although, when the story of Lazarus was mentioned, I remembered holding your hand for those next hours after you passed, hoping you would return. I know it was not in His plan, and was not what you needed, maybe even not what I needed, but still, I hoped...

Hope, in regards to missing you, well, it's been in short supply. 

I know you're fine, you're more than fine. You finished your journey, but you left me behind. 

The music tonight resonated with me. The Spirit has always spoken to me through music, and tonight was no exception. At the end, we sang, "I Believe in Christ." Several years ago in sacrament meeting, we sang that while you were there, and I felt your soul speak to mine. At the time, the words seemed like you speaking to me, "And while I strive through grief and pain, His voice is heard, ye shall obtain." Tonight, they were mine. 

I'm working through my grief and pain, and I do have faith that it will teach me, I am growing and learning, and I am becoming a better person. Through Christ, I can (and will) become who I am meant to be.

At one point, experts taught that grief can be "healed." I don't think that's actually true. Healing implies that it's "all better" and there seems to be something fundamentally wrong with that. To be "all better" would mean I would forget you, or not love you, or something, at least in my mind. And actually, current theories point instead to growing in and through the grief, that it will always be the same size, but we grow and develop further so we become better. 

And I think that's what growth is about. 

Does it mean it doesn't hurt? Oh, NO!! It still feels like a rock sitting in the middle of my own lungs, like my own heart is constricted, and the tears still often flow freely. My guess is that they always will, in one form or another, at least until I see you again.

But Aaron, I will see you again, I know that. You are my son and we will be together again, thanks to the atonement and the resurrection of Christ. He makes this all possible. I could not go on otherwise. 

So I will celebrate this Easter, and hold you close in my heart. 

Love you, little man.

Miss you. 

"Our Lord has written the promise of resurrection,
not in books alone but in every leaf of springtime."

- Martin Luther

Friday, March 22, 2024

Three Months, 13 Weeks

Hey Aaron,

Facebook and OneDrive keep sending me memories, and there are a lot. 

I mean, it's Trisomy month, plus the pandemic started four years ago, or at least the shutdown did, and I took pictures and/or video every day to document it. 

Sometimes, sometimes memory is where I'd rather be anyway. This picture, taken on a Sunday, was when things were oh so new. Your brothers prepared and passed the sacrament to us. You were there, they were there. So much has changed since this picture.

Andrew graduated just over a year later and went to serve a mission in Arizona and now lives in Provo.

Michael's papers are in and he's waiting for his call.

And you, my son, you've answered your own call to serve, but while you did have a farewell, you won't be having a homecoming, not on this side of heaven.

I made a deal (or I tried to) ten years ago that you would stick around until we were done with missions, in about 13 years, and then we would renegotiate. I meant I wanted 13 more years, not 13 years total. But I think we all knew you didn't have three more years. You held on until Andrew got home. It was so close a couple times, but you persevered, and I'm grateful. 

But I still miss you.

I think back to that last night, and it still doesn't seem quite real, and yet at the same time it sometimes seems more real than anything since then. 

I mean, really, how does this world keep turning, keep going, time keep passing, when you aren't here???

Will Friday into Saturday always hurt?

Three months down and a lifetime to go.

I love you.  

The time machine I dream of would not merely travel backward and forward.
It would have a button for lingering in the moment.

~Robert Brault

Thursday, March 21, 2024

Another "Last"

So Aaron, tonight was our very last night of ward ball. 

And apparently, Andrew left his mark on the team when he chose the mascot. He said they asked for a mascot when he was playing and he told them, "penguins." So their uniforms say "Mountainville 3rd Penguins." Silly kid... 

It seems kinda weird for that to actually be over. I remember going to games back when David was just 12, and then Jonny, and so on. Now with Michael graduating this year, it's over. No more, and that's strange.

Within a few months, it will just be Dad and me and the dogs here.

I'm not sure I'm ready for that. 

Somehow, I never thought about what it would be like with no kids here. I always assumed you'd be here, and you were.

Until you weren't. 

You're the youngest, not Michael. He shouldn't be the last to leave, and yet he is.

Someone whose child just passed asked me today when it was that I was able to start working and feel like I was semi-functioning again. Honestly, I'm not sure.

I know I went back to work on January 3rd, not quite two weeks after you left, but I don't know that I should have. When I stayed home that Friday because of training I was relieved to not have to leave the house, or I guess more specifically, to return to the house. Somehow, the returning has always been the hardest part. 

Anyway, those days are honestly kinda a blur, maybe because my heart and brain are protecting me, a trauma response to the pain. 

I don't know...

Anyway, kiddo, I miss you. I love you so much. The pain is becoming less intense, at least most of the time, but it still underlies everything I do.  I think in one form or another, it will always be there. There really isn't a day that doesn't have some tears in it. But then I discovered yesterday that the first two years is considered "early grief" so I guess that's to be expected.  

I learned this week that Nana wrote to Papa every night after he passed until she joined him 20 years later. I wish I could read what she wrote, but it gives me strength just to know it happened. I hope you're with them. After all, you're named for him. 

I love you. 

I miss you.

“Grief is like the ocean; it comes on waves ebbing and flowing.
Sometimes the water is calm, and sometimes it is overwhelming.
All we can do is learn to swim.” 

- Vicki Harrison. 

Wednesday, March 20, 2024

Spring

Hey Aaron, it's officially spring.

Of course since we're in Utah, that doesn't really mean a whole lot. While we see the sun more, it may actually be the "spring of deception" soon to be followed by 3rd winter. But whatever...

I went to the Manti Temple open house today with Gramma and Grampa Brown and Uncle Tad and Aunt Maurie. 

Manti is where Gramma and Grampa were married 55 year ago, and where I recieved my own endowments 34 years ago. My grandma and grandpa worked there for as far back as I can remember. Today Grampa told of going there to do baptisms when he was a teen, probably right about your age even. 

As we walked through, I was touched and humbled by all the efforts and talents that went into creating this beautiful House of the Lord. And so grateful for it's presence and influence in my life, the sacrifices made by so many so we can be together again. 

Aaron, it was so beautiful! Do you remember last summer when we went to the Saratoga Springs open house? Your bus driver was there, too. We saw him and his family in the celestial room. I remember sitting there with you, and something told me to cherish those moments because they wouldn't come again. 

And they didn't. 

But still, were you there? Are you here? 

My little boy, I'm so glad we got to do this together last summer.  

After the temple, we went by your site. Gramma and Grampa weren't there for the burial so it was their first time actually there, although Aunt Maurie did a video call with them that day. It's so peaceful there, the mountains surrounding you, the grass beginning to grow. 

I miss you, Aaron. 

Thank you for being my son, for blessing our home with your spirit. 

Love you so much.

 “It is not the strength of the body, but the strength of the spirit.”
— J.R.R. Tolkien 


Monday, March 18, 2024

New Flowers

Hey Aaron,

I went by your site today. I took down the St Patrick's Day flowers and put up new ones and Easter eggs. 

It's Trisomy 18 Awareness day today, and honestly, this was probably one of the few things I never thought about having to face after you were gone. I've wondered what Christmas and your birthday would be like. I have thought about placing your headstone and your angelversary date. 

Since you've passed, each Friday/Saturday catches my heart. It's been 12 weeks, and now we're coming up on three months...

But this one caught me unawares. 

So many people wore blue for you today. Family, friends, even some of my coworkers. Some who knew you closely and dearly, and others who only know you online. As they tagged me in pictures, I felt their love. 

It touches me so deeply to know others miss you too, that you influenced their lives as well. 

I think I'm doing okay, although I can be a bit scatterbrained. Saturday I went to the store to pick up a few things. Lucky it was just a few things. I was almost home when I realized I couldn't remember paying for them, and I couldn't find the receipt. Came home, called the credit card company, and nope, didn't pay for them. How embarrassing! So I went back again. Sigh...

Yesterday was a bit hard, too. I'm going through the motions, trying to make sure I'm where I'm supposed to be, doing what I need to so that I can heal. I don't think that means I'll ever stop missing you, or that the ache will ever fully leave. But I hope that I can find joy again. I have faith that I will. 

I love you, little man. 

I miss you. 

It is the first purpose of hope to make hopelessness bearable.

~Robert Brault

Sunday, March 17, 2024

Trisomy 18

Dear Aaron,

Today is St Patrick's Day; you do actually have Irish in you. 

And tomorrow, tomorrow is Trisomy 18 Awareness Day.  March 18, 3/18, three of the 18th chromosome, that "love" chromosome.  I'll be wearing blue for you. 

And I have no idea what to say about it. It almost feels like I've already said everything. Each year on this date (or around it) I've written. 

I'm struggling, kiddo. Right now I mostly feel numb. Or I hurt. I'm assuming it's temporary, but I don't really know what "temporary" means here. I'm going through motions, not really wanting to "do" anything, maybe in part because a lot of the things I needed to "do" have already been done.

Your equipment is all gone, well except the suction and pulse ox machines I'm keeping for the time being.

Your van, your bed, your gait trainer, your bath chair, your wheelchairs, your car seat, your lift; not to mention all the supplies we used monthly; all gone. The equipment company came and took your ventilators, feeding pump, extra pulse/ox, humidifier, and all the many, many oxygen tanks we had. 

I've cleaned your room and reset it as a living area again. I'm nowhere close to being ready to go through your closet with all your blankets, stuffed animals, clothes and go bag. 

All these "things" that were so necessary but only because they supported you, and I guess I don't really miss them.

But I do miss you. And it hurts.

So is it worth it? Worth having known you, fought for you, loved you?

YES!!

It absolutely is. Even knowing the soul-crushing, mind-numbing, physical heart and lung aching pain I feel, I would do it all again for the privilege of being your mom. 

You, my son, are amazing, wonderful, such an incredible teacher.

And maybe that's what I want to say about Trisomy 18. 

It gave me a gift there was no other way to receive. 

Sometimes a parent is asked (it's always a hypothetical question when it's posed) if they would give their life for their child. And of course, they always say, yes.  But here's the thing, Aaron, I did that. Special needs moms of medically complex children do exactly that. We give up sleep, we learn, research, and study. We fight for care. We teach others. We give our lives to keep you alive. 

And then when your life is over, when your heart and lungs stop and ours keep going, it's a surreal, strange experience. 

There's the feeling, the sense, that we have that if we can just learn enough, work hard enough, fight long enough, we can stave off the inevitable. We can't. We can postpone it. We can create time to build more memories we can cherish. But we cannot stop death. 

And then, we have to reinvent ourselves again, missing a crucial part of our souls. But maybe, maybe that's where the growth comes, because I am still here, still learning. And I hope, Aaron, you're proud of me. I don't want to do a lot of things, but I still try to do them. I'm trying to put myself in the places I know I should be so that I can. Often, it's a struggle, but I'm trying. I have faith that if I will continue, good will come, and those postive emotions, feelings, that are so very absent now will return.   

Yesterday I went to your grave. As I sat on the grass, I could smell spring, new life, maybe even a glimmer of hope. Easter is coming. Someday we'll be together again.  

Love you, my little leprechaun. 

My heart may be broken, but it will never stop loving.
~Jessica Garay

Friday, March 15, 2024

Jonny's Birthday

Hey, Aaron, guess what?

It's your Jonny's birthday. Do you remember playing the guitar with him before his mission? 

He titled it "Best Boy Band Ever."

And then when he came back, he did again and called it the "Boy Band Reunion."

I found it telling, and touching, that when each of the missionaries came back, there were big smiles, hugs, but no real tears until they embraced you. 

When you did go, I somehow felt it was important for me to be the one who called him to tell him. His heart broke. 

His second son will be born soon. I hope you're with him now. He's such a lucky baby to be coming to their family. Jonny is an amazing daddy, and Avenlee is an incredible mom. 

I guess it's the circle of life, although it sometimes seems like that circle got squashed, or broken, or something. I know it was your time, probably past your time, and while I'm grateful you stayed as long as you did, I am greedy, and I wanted more. 

Your brothers are simply amazing, kinda like you. I have been so blessed with amazing children. Thank you for being one of them.

Miss you, kiddo. 

Love you.

While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt 

Wednesday, March 13, 2024

Me and Frodo

Nine months old
“Are you in pain, Frodo?' said Gandalf quietly as he rode by Frodo's side.
'Well, yes I am,' said Frodo. 'It is my shoulder. The wound aches, and the memory of darkness is heavy on me. It was a year ago today.'
'Alas! there are some wounds that cannot be wholly cured,' said Gandalf.
'I fear it may be so with mine,' said Frodo. 'There is no real going back. Though I may come to the Shire, it will not seem the same; for I shall not be the same. I am wounded with knife, sting, and tooth, and a long burden. Where shall I find rest?'
Gandalf did not answer.”

There are some wounds which do not heal. There are some experiences which change us fundamentally.

You did that, my son.

Oh, it's not necessarily a bad thing. I'm a much better person than I was before you came. And I think, I hope, I have learned even more since you left. Yet that ache, that hole in my soul, I don't think it will ever fully heal. I am wounded, not mortally, but significantly. And sometimes injuries last a lifetime. I hope that the stars will shine through those holes in me. It will have to be the stars, not the sun, because I don't think I look that different than I did before. And frankly, I don't feel "sunshiney." It's a softer light, a quieter light. Maybe even a dimmer light?

But maybe, maybe it is just enough to light the path for me, and perhaps others who are looking as well. Frodo did not return a conquering hero, not in the eyes of those of the Shire. That was Merry and Pippin. He was different, a bit strange. But he was allowed to go to Eressëa where he could find peace of mind. I hope I find that magical place, too. But until then, I think there will always be a part of me that hurts, that misses you, until I get to see you again. Today you would have been 13 3/4 years old; your nine month birthday. I love you so much, my little man.

“May it be a light to you in dark places, when all other lights go out.”
- J.R.R. Tolkien

Monday, March 11, 2024

Time Change

It's light outside now when I drive home, Aaron.

It helps, mostly. I hadn't ever realized that the time change in spring meant it stayed light later, and that extra daylight helps my mood quite a bit. 

I'm a bit restless, antsy, and I don't know why. I miss taking care of you. There's a lot of things I could fill my time with, but somehow I don't. Although last Friday I did come home from work and clip Sophie (she needed it so badly) and vacuum the house. Last night I made dinner for tonight after we ate. Tonight I ought to do something for tomorrow night, but maybe we'll just grill when I get home. 

The Memorial Tribute at Primary's is coming. We received the invitation today and I have 20 words to describe you in. I think I want to mostly use adjectives. I don't want to waste pronouns or articles on how we see you. But I'm also at a loss as to what to say. 

How do we convey all that you are, all that your life was, in 20 words? Oh, baby...

I volunteered at this the last two years, and I'm guessing I might again next year. But this year, I'm attending as a parent. I could see it coming. I knew it would be my turn. But oh, I hoped not. 

Daddy and I have been talking, and I think we were blessed with 22 more months that we were supposed to have to prepare us. I'm grateful for that preparation, for those whispers and nudges, but nothing could have really competely prepared us for what was coming. And in spite of those promptings, we were still caught off-guard. 

I drove past your grave again tonight on my way home. I like checking on you, but it hurt and I suspect it always will. 

I love you, little man. I hope you're running, playing, smiling. 

Miss you. 

"Death is never a clean break - some stardust always remains."
~Terri Guillemets


Sunday, March 10, 2024

Letting Your Van Go...

Hey Aaron, your van is gone. The last thing of yours that really needed to go, that would benefit someone else.

The child who benefits from the van came yesterday to pick it up. 

He's the same age you were when we got it. We'd gotten to the point where it was so hard to go out with you that we would actually have the dicussion about how important it was to go someplace as a family. And your van gave you (and us) the freedom to take you places. You would get giddy as I loaded you. One of the ways I knew you were struggling, declining, was that the last two years, you would sometimes fall asleep while I drove. Before you started neurostorming, you never slept in the car, regardless of how tired
you were. 

I'm so glad he can use it, the freedom he will now enjoy. The smile on his face was one I knew well. He was so excited! It looked so much like yours that it both brought joy and broke my heart at the same time. 

And then last night we went to "The Lamb of God", an amazing way to focus on the Savior.  Touching, heartbreaking, and cathartic in so many ways. I am so grateful for His sacrifice, for the knowledge that I will see you again. It's hard, so hard, but there are others who have survived even worse.

I took flowers over to your grave this morning, and it occured to me in looking at all the stones (and many are of children) that every single one is loved by someone, probably several someones, who have survived their loss. 

Vicarious resiliancy. I gather strength. I move forward. 

And yet, well, I don't know...

Your "things" are gone, at least the big ones. The closet upstairs is full of your blankets, clothes, stuffed animals and several other items. I haven't touched your go bag or your clipboard yet. I'm not ready, and that's okay. 

But while those are put away, and your big equipment is gone, your spirit lingers. It underlies pretty much everything. Where the hiss of the concentrator, the whoosh of the ventilator, and the beep of your pulse/ox used to sound, your room is now quiet. The candles turn on in the curio cabinet each night and your blanket is draped over the double rocker Grampa made for you. It's peaceful in there, neat, uncluttered. 

I miss the way it was, but at the same time, the way it is now I can feel you but I don't see you still lying in your bed like I did when I'd look in there while your bed was still there. (Does that make sense?) I still feel your love and the lessons I learned from you, but it's not (quite always) the same soul crushing ache as before. It's healing, comforting, accepting (at least at the moment). 

I miss you so much. As I held your nephew Barrett tonight I asked him if he knew you, if he remembered you, if you played together. I hope you had fun together. I hope you and he and Jonny and Avanlee's little one all spent time together. It hurts that you won't know them here. Do you remember when Linnaea was born and you told everyone at school about her?

Tonight we had everyone but Joseph and Sarah, and you, here for dinner to celebrate David's and Jonny's birthdays. It was loud, chaotic, and wonderful. Linnaea and Elend play with your toys, including the ones you were too weak to really use. It feeds my soul to see them loved. 

Somehow, life goes on. Still doesn't quite make sense that it does, but I guess that's okay. The point is, you were here, you lived, we have been so blessed. Thank you for coming to our home, to our family.

I love you.

"Oh, touch my hеart and bid it know
That, while in darkness herе
The Light is ever near
And Thou wilt make me whole again"
Rob Gardner - Lamb of God

Friday, March 8, 2024

Dear Aaron...

Dear Aaron,

It's Friday night.

Again.

I feel like in some ways I lost my innocence 11 weeks ago. 

Eleven weeks ago tonight I went to bed expecting to spend a few more nights on the chair that masquerades as a bed in the PICU, and then come home with you. 

Home to Alpine.

It honestly didn't even cross my mind when I went to sleep that you only had another two hours.

And somehow, somehow, I thought that I had already experienced grief, that in some way, having been through anticipatory grief it might lessen, or help me understand, or something, the loss of you.

But I was wrong. So, so, so wrong.

Nothing could have prepared me for this, for life without you. For my heart and lungs to go on when yours do not.

But still, you have left an incredible legacy, and it is so powerful!

Without you, I never would have gone back to school. Our family would be so different, and not in a good way. I never would be where I am, working, helping others.  Work went really well today! There were some pretty awesome things happening this week with clients. It's them, not me, but I wouldn't be in a position to help them find their way without your influence, your inspiration. 

I left the office on such a high! I was pumped, grateful, smiling. I thought, "This is going to be a good night!" 

And then about the time I hit the first light, the tears started. Again. There are a few nights I make it home without crying, but not many yet. I have faith that I'll get there. I have hope that you're watching over me, over us. 

I love you, Aaron. 

I hope you're happy, running, playing, singing, teasing the others. 

I miss you.

Love,
Mama

Grief is your emotions composing a goodbye letter to your loved one.

~Terri Guillemets