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


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


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.


  • "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


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?


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.


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.


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

~Terri Guillemets

Wednesday, March 6, 2024


Hey Aaron,

It's been a bit of a busy day, but I kinda like those. I find when I stay busy, it's easier.

Your room looks so different now, but it has your fingerprints (okay, and probably some of your food too) visible everywhere. I finally hung a scarf over the window. I never did while you were here because fabric tends to trap dust, and your asthma was already tricky enough. I wanted to do everything I could to protect you, even forgoing any soft window treatments. But now it lends a more finished look to the room. 

Your butterfly still hangs in the window where it has ever since my aunt and uncle gifted it to you on your first birthday. Your hand and foot molds, and your bunny with the trach and g-tube are in there, as are pictures and paintings. The piano is back where it was until we had to move it to make room for your big bed. 

It's peaceful in there, and I'm mostly at peace too, I think. At least most of the time. 

6 years ago today

We had a massive windstorm come through last Saturday. Michael and I were out buying me a new car, you know since I no longer need the ramp and wheelchair tie downs. I love my car. It's smooth, quick, so comfy. But I would give it all up in a heartbeat to have you here, or to have you here the way you were before you got so sick two years ago. 

I know, I know it wouldn't be fair to you to bring you back. And so I will try to stop wishing for that. But I do miss you, terribly. 

I was at the hospital today, talking to neurologists about family centered rounding. I actually didn't know very many of them, but there was one who had cared for you, and until I said that you had passed away just before Christmas, she hadn't known. I miss the people up there. I miss our relationship with them. I got to talk to the nurse manager from the floor where you spent so much time. She said the nurses and techs still talk about you, and ask about me. I interact with a lot of the staff up there, but it's mostly the leadership, or support services. I don't see nurses or RT's, and not even that many of the doctors who cared for you. I miss that part of me.  

Anyway, back to the windstorm. Michael and I went by the cemetery on the way home, and I hoped your flowers and things wouldn't be blown into the next county. They had been scattered a bit, but were also weighed down by the snow so we were able to rescue them all. I brought them home, cleaned them up, and pulled out my wedding bouquet that's been sitting for almost 35 years. I got a basket that I could stake down to help keep it in place, (I mean, it's March. It's going to be windy.) and set out to create a new grouping. I think it turned out okay. And as I did so, I thought of my mom putting it together for me all those years ago. I wondered about the dreams she had for me, and how she felt in letting me go. I know it's different, but I felt like I was doing for you the way she did for me. 

I love you, Aaron. I can't take care of you here any more. There are no more g-tube cares, trach cares, diapers, or feedings to prepare. No more meds to draw up and give. No more breathing treatments. So I take care of your grave, write to you, and help at the hospital. 

I do what I can here because while your journey here is over, mine is not. And I want you to be proud of me.

Love you, miss you.

"Life blooms right through death, and they beautify each other."
~Terri Guillemets

Tuesday, March 5, 2024

David's Birthday

Hey Aaron,

Today's David's birthday, and then Thursday is Sarah's, and next week is Jonny's. 

Then Elend and Andrew.

And you.

What is it like celebrating your birthday in Heaven? I imagine it's pretty awesome. I mean, you came here almost 14 years ago to get a body, a crucial part of your progression, so I think it should be commemorated.

But anyway, today is David's, although we're going to celebrate this weekend. 

He is such an awesome big brother. 

I remember several years ago we were at 7 Peaks, and he came by. I can't remember if he was on his lunch break or what, but I needed to go to the bathroom, so he sat with you in your little tent, keeping an eye on things. When I came back, there was an older gentleman just standing there, watching the two of you. He turned to me and said, "It's nice to know there are still heros in the world." 

Then a couple years ago, he was going to replace a faucet for us if I would just go get it. I wanted him to because I was worried about not getting the right one and he assured me that I could, and he simply didn't have time. While I was at the store, I noticed some steel belts showing through the tire and not wanting to end up with a blowout, I called and asked if he could also make time to change the tire while he was over that night. 

His response? "Where are you? I'm on my way."

I said, "I thought you didn't have time." 

"I don't, but I'm also not going to leave my mom stranded somewhere." I assured him that the tire would get me home and he could stay at work, and that night he changed it. 

Yeah, he's a pretty awesome hero. He was always a good kid, but he's become an incredible man. He watches out for me especially now that you're gone.  He is a blessing, as are you, and all the rest of your siblings. 

I love you, kiddo. I miss you, but sometimes the ache isn't quite as profound, at least all of the time. But I do still miss you. Probably always will. 

"My brother may not always be by my side, but he is always in my heart."
- Unknown

Sunday, March 3, 2024

So Lucky to Be Your Mom

Hey Aaron,

Today (and yesterday) have actually been pretty good. 

I mean, I still miss you, but it's been more of a dull ache, a longing. Less of a torment, an agony. 

I'm still kinda numb. I'm sure that helps. 

Today at church, a friend stopped me on the way out and asked if I was okay. She then mentioned that she hadn't ever heard many of the stories told at your funeral and would love to know you better. She asked me to call if I wanted to talk about you because she wanted to hear. 

I feel like I talk about you so much that I worry I'm bugging people. To be asked to share is such a blessing. 

We're still trying to sell your minivan. I'm hoping to give someone else the mobility and freedom you enjoyed. I'd get you up in your wheelchair and ready to go, and you would be giddy. You loved getting out and about. One of the ways i knew you were struggling the last two years is that you would actually sleep sometimes in the car. Prior to February 2022, it didn't matter how tired you were, how late you'd stayed up (or not slept at all), if you were in the car, you were awake. 

I'm so grateful we had it for you. 

My sweet boy, you lit up the world around you, not only for me but for so many more. Many didn't even ever meet you in real life, but knew you through social media.  There are children alive today because you were, and others who have already gone on but lived for a time and made memories with their families. Others knew you well in the hospital where they took care of you, and also played and laughed with you. You were such a blessing, and still are. 

You lived more in 13 1/2 years than many do in 80. 

How blessed we are for having known you. How did I get so lucky as to be your mom?

"It is not length of life, but depth of life."

- Ralph Waldo Emerson

Friday, March 1, 2024

Trisomy Month Hurts This Year

I don't even know where to go with this.

The last few days have been pretty good, not bad at all.

I mean, I still miss you. I don't think that will ever change, not really. But they've been pretty even-keeled. I even picked up the hearts and valentines from your grave yesterday, and forgot to take the St Patrick's Day stuff with me. Tonight after work, Michael and I took those, picked up the things that had blown over (I really need to take stakes out there to hold them) and decorated for March.

And it was fine.


It's March, Trisomy month. And I've tried all these years to bring awareness to it. Some years I've posted a new picture from each day. And now pictures are the only thing I have left. I updated my profile and banners on Facebook, but I don't know how much more I can do this year. The theme this year is "Changing the narrative together." You did. Because of you, so many other children were seen as having value and given interventions that allowed them to live. But now you're gone, and it just hurts. 

And I'm devastated again. It's been ten weeks, ten weeks!! How????  

My arms and my heart ache. I just want to hold you. 

Please come tonight, come see me in my dreams. 


“Some only dream of angels, I held one in my arms.”

– Unknown