Grief is Weird

Grief is weird. 

And messy.

And strange.

It messes with my mind.

Sigh...

I have, for So. Many. Years (like well before you came along) needed to be exact in my schedules and scheduling. Before you were born, we had multiple kids in multiple activities, and few if any drivers besides myself. And after you were born, I had to arrange nursing, or make sure I had enough oxygen and other supplies, plus battery power to last however long we were gone. 

Not anymore.

Last Saturday we went to Cedar City for Joseph's concert, and we decided about mid-day what time we were leaving.

Today we had Matthew's graduation and decided at 1 pm what time we needed to be leaving.  

Tonight, we finally came up with a time to leave tomorrow for Sarah's graduation in Cedar and the reason we had to determine that is because Mary has been asking for a week what time we're picking her up. 

I just can't seem to create plans that involve timing. 

I only worked a half day today because Matthew graduated from BYU this afternoon. I figured that would be awesome, and it was! 

But first I had to drive home. Maybe it was the rain, maybe the song that came on. I don't know, but I started crying again. I actually don't cry every day on the way home anymore, but today I did.

I remembered when Matthew graduated from Lone Peak and the look of utter joy on his face. You often wore the same smile and glow, and I miss it.

Tonight we celebrated him and the rest. And when the main speaker talked about all those who were supporting the graduates, those in attendance, those watching remotely, and those who were watching even more remotely from heaven, I fought back more tears. 

Aaron, you graduated too, but I didn't get to make you a candy bar lei. Instead, I chose your burial clothes and your casket, and dressed you one last time. 

Grief is weird.

“Here is the thing about my grief:

It’s like a very messy room in a house

where the electricity has gone out.”

— Monica Hesse 

Hope...

I was at the hospital today for meetings, Aaron, and I saw someone I used to work with. He asked how you were....

I felt bad. I didn't realize he hadn't heard. But I guess that's part of the nature of working in a large hospital. Children die, and not everyone knows. 

And then I also saw one of your favorite RTs, and an ED doctor that had helped you.  I miss those people! I miss talking with them, working with them. I reached across the desk to grasp the RTs hand and she retorted, "Oh, no you don't! You get a real hug!" and came around to where I was. 

I love being there; I'm so grateful I still get to serve there. Yet another blessing you brought to my life. Thank you. 

Then I went to Michael's track meet. I haven't been able to get to one yet because they're always on Tuesdays, when I'm working. But JV Regional was today, so I could. He got his personal bests in all his events, and took 2nd in long jump! 

He's amazing, and he misses you. He paints a blue ribbon on his arm and wears your initial around his neck. It's his ways of honoring you, of remembering you, of keeping you close. Do you lend him your wings? He was your legs, and voice during your life, do you now help him?

He told me later that his first jump, his longest ever, was 18'3", and figures it was because of you: three-18, Trisomy 18, you. 

As I left the meet, I saw messages on the sidewalks. This one really spoke to me. I'm trying, Aaron, and there are times I can actually feel hope. And even when I don't, I have hope that I will feel it at some point again. So hoping for hope? Maybe? 

Tonight Andrew went with me to the Mascot Miracle Foundation Night at the Aquarium. I saw friends, I gave and received hugs, I needed this. But oh, I miss you. We went a few times over the years and you loved it. You loved watching the jellyfish float slowly in the water, the sharks swim overhead in the tunnel, and the penguins diving off the rocks. And the music, the dancing, the people...

Yeah, I think I felt you with me today, especially at the hospital, which was wonderful, but you're still not here.

April 2023 Aquarium night

I miss you, little man.

Love you so much. 

"Hope is the feeling we have that the feeling we have is not permanent."

~Mignon McLaughlin

4 Months, Miss You.

It's been four months today since you left.

Spring has come, new life. 

Yesterday as I got ready to leave work, I noticed that my peace lily is starting to bloom.

Peace...

Do you love your new life? Are you thrilled to be able to run and play and sing? I won't add "laugh" because you did a lot of that here, too. I guess you played, too, but still, you were hindered by your body.

I miss your laugh, your smile, your playful nature.

I went by the cemetery tonight to pick up your things in preparation for mowing day tomorrow. I had noticed before that one of your butterflies was fading. When I got there, Mary had replaced it and added another. Four butterflies, one for each month you've been gone. 

I knelt there and just sobbed. It hurt so bad. 

I miss you.

Tears are in my eyes and emptiness is gnawing my heart.

~Kate Stephens

Fuzzy Socks Remind Me of You

Dear Aaron,

I put my fuzzy socks on tonight. The ones I bought when we were at the hospital in November. So many purchased and worn out over the years; that happens when you're there for 529 days (and nights). These were the last ones I picked up and now I wear them a lot at home, 'cause I don't like cold toes, among other things.  They're soft, almost silky feeling, with rubber knobs on the bottom because hospital floors are slippery. So they were in my suitcase, not my drawer, and I didn't wear them here. Now I do. 

I was released as chorister today, and I have to admit, it hurts a little. I'm trying to trust that it's Father's will, that it's time. But I love leading and I love the focus I have when I'm leading. The Spirit speaks to me through music and it helps. I mean, I'll still be singing the hymns but somehow I don't always focus on them as much when I'm not leading. And the timing...  Well, most wards only have one chorister but because I was never sure if I'd be in church or we'd be at Primary's, we had three and we'd rotate. Now it will be just one again, but I was also back to where I'm not leaving suddenly anymore. 

Change is hard. Missing you is hard. Today things just hurt, again (or still). 

It's been a bit of a busy weekend, and a busy week to come. Yesterday Daddy and I went down to Cedar City to see Sarah and Joseph.  Joseph organized and conducted Rob Gardner's The Lamb of God. Sarah played clarinet. I loved watching him do what he loves, and the music touched my soul. I was struck again at Mary and Martha's faith. I mean, I can look back and have faith in the resurrection because Christ has already risen. That hadn't happened yet, and they still affirmed that they knew they would see their brother again. 

But sometimes, often, that day seems so far away, and as they performed, I was taken back again to your room early on December 23rd where my soul cried for you to return, to return now, for your body to move again and for you to be healed.  

Next week brings more changes. Andrew moves home for the summer on Wednesday, Matthew graduates Thursday and leaves for his last Folk Dance tour on Saturday. Sarah graduates on Friday. Dad is working from home most days now. Summer is coming and in one more month, Michael will graduate from high school and my public school years will officially be over. 

But the house also fills up most Sundays. I miss Joseph and Sarah, but today everyone else was here. Matthew and Kensey are going through his things upstairs getting ready for their move to Wisconsin when he comes back from tour. Andrew and Mary are still hanging around. David left a little while ago. Jonny, Avenlee and Elend have gone home and sometime in the next couple weeks will add another little one. Deborah, Bronson, Linnaea and Barrett were up here too and I got to hold him. Did you guys play together before he came? Are you still hanging out with your next new nephew? 

December 23. You had gone "home" that 
morning and Jonny's family wasn't
here yet, but the rest all came. 

I am so grateful to be your mom ('cause I still am!!) and grateful for your siblings, too. Yesterday, Michael and a bunch of kids from the ward went on a rappelling activity and two adults were injured, one quite severely. It was rough, but Michael handled it really well. I have to think it's because he's been exposed to so many emergency situations that he just kept his cool. But he was also coming home to an empty house 'cause Dad and I were going to be gone until late. In fact, we had considered just staying overnight in Cedar rather than trying to drive back. But when I learned what happened, I was worried about him being alone. One phone call to David and he was on his way to the house. And once there, Bronson also got involved and they all hung out downstairs together. 

It helps my soul to know your big kids have each other to depend on. I have to think that's in part because of you. You brought us together, taught us to pull together, and helped us see that when there's a problem, we all bring what we have to the table to make things better. That's a life lesson that can't be created artificially, not really. 

We miss you so much, but your legacy lives on. It's hard knowing you'll never have descendants to remember you, to carry your line, but still, you have made an indelible mark on our family, honestly on the world. You taught so many; your influence is still here. 

But really, I wish it was you, physically still here. I'm selfish that way. Trying to cling to hope, cling to my Savior. I know He lives, and you will someday too. But right now, I miss you.

Love you so much,
Mama

"Jesus Christ is our hope and the answer to life’s greatest pains."

- Jose L Alonso

Hope, and Who I Am

Dear Aaron,

It's been a few days...

That doesn't mean I haven't thought of you, not at all. In fact, Tuesday morning after a parent meeting for a client, Mom asked me how you were doing. Sigh....

I mean, I guess the truth is that you're doing just fine! Really. Me on other hand...

Well, I think of you all the time. 

On Tuesday morning when she asked, Tuesday evening when I picked up your things at the cemetery, and again when someone challenged us to think of our identity, our intrinsic identity, not just all the hats we wear. I guess you don't actually define me, and neither does our relationship, but all the same, you are definitely part of me. You changed me, for the better, but change hurts, and so does this.  

And Wednesday morning when I discovered that the mound above you was a bit too high and the lawn mower scalped the grass, which meant I made a trip to city hall (I truly love that I live in a small town) and talked to a friend who is also over the cemetery about it. She'll get it taken care of. I need your place to be beautiful, peaceful, and the idea that it will be a dirt patch that gets muddy just guts me all over again. While I was there, I saw a former neighbor who lost her own boy almost six years ago. 

And I thought of you when Facebook memories came up, and when I went by tonight, and frankly, pretty much all the moments in between.

But on the way home, I was listening to music and Hope by Paul Cardall came on. Honestly, his piano music plays almost constantly as it brings me so much comfort. But underneath the music, so faintly that at first I thought I was imagining it, I heard a child's laughter.  A Child. Laughter.  Hope.  And through my tears, I smiled. And cried and smiled. 

You used to laugh so much. I wish I had recorded your laughter but I don't think I did. Like so many moments, I simply enjoyed them because I thought there would be so many more. I was wrong. You really never did laugh again, not much, after February 2022. But in the song, I could hear it, hear you, and it touched my soul to know that you do now laugh. And run. And dance. And sing. And play. And I hope, oh I hope, you bend close and put your arms around me, even though I can't feel them. 

Michael did senior pictures yesterday with cousin Rachel. It really was a lot of fun, and they'll be our last senior pictures (like so many other lasts). Michael always wears an A around his neck for you, and I thought briefly about asking if he wanted to bring it out, let it be seen, but decided not to. I mean, these are his, about him, not about you.  

But then after taking several, he pulled it out. He positioned it in front of his tie, over his shirt, kept it on when we did track pictures. It's there, you're there. You are so, so important to him. And it made my heart smile. 

Your influence goes on. In the hearts of so many, you live on. 

Yesterday as I drove to Provo, I noticed the sun shining on the still snowy peaks, lighting the light blue sky with cotton-candy colored wispy clouds. This world is such a beautiful place. You, my son, are such a beautiful part of it, even if I can't see you anymore. 

I miss you so much. 

I love you so much.

Love,
Mama

The reason it hurts so much to separate is
because our souls are connected.

~Nicholas Sparks

Monday Night

Hey Aaron,

I'm sitting at home alone again (Dad's still at work and Michael is with friends) except the dogs that just opened the back door and came in. Still haven't convinced them that they also need to shut the door...

Anyway, it's super quiet here. I can hear the ice maker clicking away, and sometimes the snick of Sophie's toenails on the tile. That's about it. No whirring of the concentrator, whoosing of the vent. Somehow I still listen for those in the silence. Even at night, I find my ears straining to hear, but only cars outside pass by.

Today's actually been a pretty good day. I mean, it's cloudy and rainy, but we did have some sunshiney days over the weekend, so that helped. 

And yesterday most of the kids were here for dinner, which meant so were Linnaea and Elend and Barrett. Oh, it feeds my soul to have your brothers and sisters, brother and sisters in law, and niblings here. We were just missing Joseph and Sarah, and Matthew and Kensey. And of course you. 

Yesterday in church, Michael bore a powerful testimony of how the Lord is in the details of our lives, and that sometimes when we think something should work out differently, it turns out for the best after all.  Because of a misunderstanding last month, he ended up not competing in a meet that he thought he would, and he had already given away his work shift. But that meant that he was able to go to the temple with some friends instead. And it wasn't just one temple he went to, it was three: Mt Timpanogos, Draper, and then Saratoga Springs. And while he was there, he took time to go to where we all stood for pictures after the tour, and remembered you. 

Aaron, he is so amazing, just like you. 

And I guess I'm trying to feel the same way about you leaving. I have faith in Father's plan, that this was what was needed, but I'm still not quite seeing the big picture, not yet.

I love you, Aaron. I don't know how I was so fortunate to have been blessed with so many amazing kids. Every single one of you are a blessing in my life. I am so grateful.

I miss you.

I love you even more.

Love,
Mama

"The death of a loved one is a sudden silence —
one of those deafening silences that leaves ringing in your ears."

~Terri Guillemets 

Some Days are Hard

Dear Aaron,

Some days are just hard. And there's not a real "reason."

I sat with a sweet friend in Relief Society today and someone else was talking about having her son appear right by her side the day after he died in a plane crash. Honestly, I'm not sure whether my friend asked me, or I asked her ('cause I know I was thinking about it as we listened) if we had felt our loved ones. I think she asked me. I know I said no, I hadn't felt you with me, although I've dreamed about you three times. She said she hadn't felt hers either. 

The teacher asked if we'd ever felt alone, and what we had done, or what happened, or something like that. (I think that might have been what prompted the story.) I just couldn't...

I know I'm not "alone" but it feels like it so often, especially somehow in the middle of a group. 

Anyway, I know I'm not alone. I know God is with me. I know Christ knows what it feels like and understands. I am so grateful for the Atonement and the Resurrection, but still... 

Like I said, some days are just hard.

And this is one of them.

Oh, my baby, I miss you so much. 

The weather is getting warmer, the sky is brighter, and it helps my spirits.

But nothing takes your place or fills the Aaron-sized hole in my heart. 

I just miss you.

Love,
Mama

"This I know: there is nothing as lonely as grief."

~Abby Geni 

Memories

Dear Aaron,

Memories seem to be coming at me. 

Yesterday, Daddy and I went to Westlake's ballroom concert. It caught me by surprise because we don't have kids there, at least as students. But Jonny and Deborah are coaching the team so we went to support them. 

And they actually did a number! It was the second show of the night and doing two shows in one night was more than the special needs dance class was able to handle, so the coaches threw together a couple numbers to fill in the gaps in the second show. Deborah and Jonny looked amazing, and it was so much fun to watch them again.

And then in the senior number, it was almost like watching Deborah, and then David, and Jonny, and Matthew, and finally Joseph dance their final shows. As Jonny announced it and gave tribute to each senior, I heard his voice catch. Coaching is such a labor of love for both him and Deborah. Watching the kids perform, all of them, filled my own soul. 

And I thought about you dancing, how you would dance in your wheelchair when we would go to shows. And you would dance each year at your own dance festival. During the pandemic, they held it online and we sent in video to participate. Now you dance without limits.  

I stopped by the cemetery after and it was dark, 'cause you know that happens when it's 9:30 at night. With the seasons changing, it's now light when I get there after work. But last night, last night it was dark. And your little lights were on, and I could see your place, shining in the darkness, giving my own heart a little lift. I mean, I cried, but I also smiled.

I've been thinking about a couple phone calls I made 14 years ago. One was to a neighbor, and another to a friend I hadn't seen since we were in college. Both had buried babies, boys in fact. I didn't know how to move forward. I was carrying you, and you were so active pretty much all the time. But doctors were telling me that you wouldn't, probably couldn't, live, and I just couldn't fathom how to go on.

I really don't remember much of what either said, but I knew they had somehow survived it, and if they could, so could I. And for almost 14 years, I clung to that.

Now, I live it. And somehow the world goes on. I'm still not quite sure how, and I couldn't tell someone how to survive, but the fact is, it does, and I am surviving, at least I think I am. 

I still miss you dreadfully. Two months from today is your 14th birthday and I don't think there's a day that goes without at least a few tears. But Aaron, you taught me so much, you helped me, you are my own personal angel. What a blessing to have been allowed to know you and love you, and to look forward to when we are together again.

Love you so much, kiddo.

Miss you too. 

Memory is time folding back on itself.

~Garth Stein

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 

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

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 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 

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

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

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.

Mosiah 16:8

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

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

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

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

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

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

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

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