Still Standing, Standing is Hard

Dance Festival 2022

Dear Aaron,

I think I've been numb, probably for several days.  

"Gray day ... Everything is gray. I watch, but nothing moves today." (Dr. Seuss, My Many Colored Days)

Nothing moving, at least not inside. 

Oh, on the outside I'm "just fine." I go to work, to meetings, to church and work in the yard at home. I talk, laugh, sometimes sing, occasionally write. 

But I feel detached, static, and unresponsive. Just going through the motions.

Then a series of events caught up with me. Facing some things at work, good things, but hard things. Holding space for people, grateful to be able to do that, and also leaning in and feeling their pain with them.

And then at church (another place I've felt somewhat anesthetized) during Sunday School, Lesa Mecham made a comment. She mentioned how during the many times she was in our home while you were here, she could feel the love and peace your beautiful spirit brought to our home. 

And the tears came. Oh, Aaron, I miss that!! I miss you, and I miss how I felt when you were here. 

I played the piano and sang tonight for the first time in longer than I can remember. It was rusty, and my voice was creaky, but it softened me a little, I think.

Dad and I just finished watching the Harry Potter series again, and a scene at the end hit me in a way it hasn't before. But then, I don't think I've watched it since you died. Harry sees his parents, Remus and Lupin and asks why they are there. His mom replies, "We never left..." He asks, "Does it hurt? Dying?" Remus assures him, "Quicker than falling asleep." 

Are you still here? Did it hurt? It didn't seem to. And you appeared to already be asleep. 

And then you were gone.

Dance Festival 2023, your last one

Oh, baby...

125 weeks. Will I always know? 

Will there always be times when it feels like a knife in my heart? 

Will I always be pulled in two directions? One part of me, a part I think that died and went with you back in December of 2023, and the other part trying to live in the present?

I'm trying. I really am.

It's just that sometimes I wonder if I prefer the numbness. It doesn't hurt so much. It doesn't feel. 

In all your frailty, you were stronger than I am.

I miss you so much....

Love,
Mama.

"In the grief of losing someone,

Why do I feel like the lost one?"

~Terri Guillemets

Rough Couple of Weeks

Dear Aaron,

Rough week, rough two weeks.

And today is Bereaved Mother's Day.

I know why this week hurts; I'm less sure about why the previous one did. But I've cried more the last two weeks than I have in a long time. 

And it seems to have gotten to me physically as well. 

So a week ago was the annual Primary's Memorial Service. I got to see an old friend there. Somehow I hadn't put together Dr. Chief Medical Officer with Dr. Friend from the PICU until she walked in. I miss those relationships!! Losing you didn't just mean losing you. It meant losing people I'd grown to know and value and even cherish. To hear her talk about you, to say that you still are frequently referred to in the PICU, that when she sees a green Posey bed her first thought is that you're back, and the second is that no you're not....

Well, that hit deep in my Mama heart. To know that you made such an impact on the people there means so much, and I treasure that.  

Then Tuesday I learned that Leila is playing with you and all the rest of your friends in heaven. I remember when she was born, when her NICU told her mom that it was futile and it was time to turn off the ventilator and let her go at 35 weeks gestational age! Mom asked me what I thought and I told her to go back and tell them that as long as she was a preemie, to treat her like a preemie. And when she wasn't anymore, then other discussions could be had, but not until then. 

I used the poem Aunt Chelle wrote for your homecoming and made a poster for her when she came home. She was feisty and fiery, and her parents were no less amazing. We got to meet at the SOFT Conference in 2015. And at 14 years and 4 months, she danced through heaven's gates. 

On Friday, Daddy and I went to Westlake's ballroom concert. One of the final numbers was the "How to Train Your Dragon" medley. In the middle, one of the dancers falls slowly and the company gathers around mourning. There is a single loud beat, which symbolizes his heartbeat stopping. Your Jonny choreographed that part in memory of you.  After the first time they danced that number at a competition last year, he told the dancers the meaning of that part. Friday was the last time that will be danced. My video isn't the best, but I keep watching it over and over. 

And my own heart... (or body or something) well, it's not too happy right now. Things definitely pointed to it being my heart, which earned me a golden chariot ride from the AF hospital to the Utah Valley Hospital where you were born in the wee hours of the morning almost 16 years ago. All the tests have come back good now, so I get to go home. But I have once again gained more appreciation for all you went through. I don't like being a patient. I'm not particularly good at it. I mean, when I'm refreshing MyChart every few minutes for a report I've been told will take a few hours to compile...  Well, there might be a patience thing that this patient is struggling with. 

Don't get me wrong. They've taken amazing care of me here, really. But oh... 

I'm glad to be heading home.

I just wish you were there.

I was looking at the mold of our hands while dusting last week, and I couldn't quite feel yours in mine as clearly. That hurt. But I know you're still with me.

I miss you.

Love,
Mama

Grief is reading —

over and over again —

the goodbye poem

Death wrote to you.

~Terri Guillemets 

Memories....

Dear Aaron,

Well, an end of an era.

For 12 years I've served at Primary's on the Family Advisory Council. Years of meetings, gatherings, advocating, trying to serve as the voice for other parents. Years of connection with other parents, with staff, with friends.

And I'm leaving.

Our Lehi Executive Team

It's time, really it is. It is time for some new blood, for someone else to have a chance to serve. 

Bittersweet.  

Memories of designing the new hospital, of discussing family centered rounding, of sharing your story...

Working at the main campus, transitioning to the Lehi campus. 

Lots of memories.  

I'm not actually done until after our meeting in May, but it still feels empty somehow. 

Another loss...

I feel lost...

I miss you.

Love, 
Mama

“There comes a time in your life when you have to choose to turn the page, write another book or simply close it.”

― Shannon L. Alder

Easter 2026, 119 Weeks

Dear Aaron,

Easter Sunday.

Again.

He is Risen, and again, you are not . . . yet.

I sit here in waiting for the sun to rise, watching as I have so many Easter mornings, thinking of you and of Gramma.

Grief quiets, a bit. Still there, still aching, still longing. But not as bone crushing, gut punching, heart wrenching as early days . . . most of the time.

It's cold again this year, and my spring bulbs have bloomed. I look at the window waiting for those first beams of light and see the yellows and reds, and further down some white and purple. Planted last fall, just before the first hard frost, they slept all winter and now months later are coming up.  

A little while ago I pulled up to your spot as "Spider's Web" played. As I rolled down the window, I could see silver threads among the grass from spring spiders, and white moths danced among the evening air. The next day on the way home from the bus stop, a butterfly flitted around Linnaea and me. It alternately followed and led us home.

Is this your way of saying, "hey, I'm here!"? 

My sister told me a little while ago that she had the distinct impression that Gramma wanted her to tell me that you were well, happy, content, and busy. And also so very aware of what is happening in my life.  I pray that's true. Somehow I feel it is.

Oh, I still miss you, my son. Part of me is empty and will be until I hold you again. 

Blessed Easter.

He is Risen.

And someday, I will be with you again.

Love,
Mama

Take the silver thread of a spider’s web

And spin, spin, spin

Silver wings to fly and sing 

Upon the wind.

High above the trees, across the seas

And through the sky

To the rainbow’s bend, where stories never end

And dreams never die. 

Because Love...

Because Love...

Dear Aaron,

Trisomy awareness -- Because love... 

Because love, you came.

Because love, you stayed.

Because love, we learned and grew and became more.

Because love, we held on tight.

Because love, we let you go.

Because love, we hurt and grieve, and have faith that we will be together again.

Because love, there is no end, no permanent goodbyes.

Because love, you are always part of us, and we are part of you.

Because love, I keep your memory alive.

Because love, I didn't give up, and I won't give up now.

Because love, grief and love, pain and joy, life and death, and love forever.

Tomorrow is March 18 -- Trisomy 18 Awareness Day. And I haven't even written to you yet this month.

Spring is here, at least it seems to be but this is Utah so who really knows. 

I sit outside on the patio and see tulips coming up, pansies blooming. In my mind, I plan the flowers to plant. 

The rainbows shine on my walls again and in the car as the sun hits the crystal hanging in my window and from the rearview mirror.

Sweet Baby R was given her name and blessing ten days ago, and Baby M joined the family a few days earlier. I wish Matthew and Kensey weren't so far away, but it did my soul good to hold Baby R as she snuggled in and slept. Something inside of me healed, just a little bit, and I was at peace.

This is weird, Aaron. I don't know what I'm doing. Often I feel numb, or that the ache has buried itself deep in my bones, my soul. 

I still find myself masking and the mask depends on my relationship with people. I don't want anyone to think I'm wallowing in misery all the time because I'm not. 

Those who have lived (if we do actually live) through child loss get it in a way that others cannot. Even in the pictures I choose for Facebook reflects the different relationships. For my"normal" one, it's you and me grinning at each other after one of your dance festivals. For the medical one, I rest my cheek on your head, close my eyes, and hold onto the sensation of having you in my arms.

Both are true and also masks, reflections, but...  well...  different, I guess.

It's almost time for the hummingbirds, for the solar lantern, to refresh your garden. Spring is here, summer is coming. New life, sunshine, warmth.

I hope it warms me, too. 

I miss you.

I love you. 

I'll wear blue tomorrow for you (even though you prefered red).

Love,
Mama

"Because of Him, guilt becomes peace, regret becomes relief, and despair becomes hope,"

President Russell M. Nelson

Cha-cha?

Dear Aaron,

Step forward, step back. I always prefered quickstep to cha-cha. This has been (and continues to be) hard!

No, not hard like you did it. But again, I think I'm a wimp, and it's hard for me. 

I did make it home on Tuesday, the last time I wrote you, but I was a weak as a newborn kitten. I couldn't walk from one end of the house to the other without sitting down to rest. And then standing up again was another battle. Two to three naps (long ones) per day. I was finally able to shower on Thursday with the help of a shower chair but made sure someone knew I was in the shower so they could help if I ran into trouble. I didn't, but I also went right back to bed after. 

I was however, doing a little better every day. I've never been sick before where I could tell a difference from day to day. That continued until about Tuesday. Then my (left) shoulder hurt. Wednesday morning I woke up with a left-sided backache that took my breath (yeah, that I'm still struggling with) away. Sigh...

I had quit taking Tylenol and ibuprofen on Sunday. This was totally new. Hauled myself to the doctor who ordered a CT scan stat, and there was good and not as good news. Pneumonia has largely (but not completely) resolved. And I have a small subpulmonic effusion. 

Why didn't I remember that all those times you struggled, they'd turn you so your "bad side" was up? Why do I always lay on my left side? Where is the residual pneumonia and effusion? Yep, left side. 

So back on pain meds, using a heating pad, watching my sats (which are generally fine) and feeling crummy and exhausted all over again. Filed for short-term disability and still not back to work. Hoping that when the pain is under control, I can start doing some telehealth sessions from home, but we'll see. 

I can tell I'm sick because I'm not leaving the house much and I'm not going stir crazy.

How did you do this over and over and over? 

On a positive side (I guess?) I'm actually not missing you as much as usual. I dream about you frequently. Apparently, vivid dreams and nightmares can be a side effect of sepsis. I don't think I've had nightmares, maybe because I've already lived one. But I have incredibly realistic dreams of being with you.  

A few nights ago, I dreamed you were dancing on my lap in my arms, and then snuggled in close and fell asleep. You would have been about two or three. Then the next night, I dreamed I was trying to put together your vent circuit. I recognized that it had been a while, but muscle memory took over and I got it, and you laughed at me from your wheelchair. 

Sometimes I begin to wonder if I'm napping to spend time with you as much as I'm napping to recover. 

Oh, I miss you!! 

Please keep coming to see me in my dreams...

Love,
Mama

"I think the truly natural things are dreams, which nature can’t touch with decay."

– Bob Dylan 

My Turn?

Okay Kiddo,

You know, I had so much love and admiration for you and your attitude and endurance. 

I now have even more, and my experience pales in comparison to your easiest admits.

You handled rough times with so much more grace than I have.

Got sick just over a week ago with a minor cold. It really wasn't a big deal and I started getting better about day 4. 

Day 5? Not so much. 

Day 6 (Saturday) was worse. My chest felt tight, I had a low grade fever and a nasty, gross cough so off to Urgent Care I went. X-rays (really clean) and exam and the diagnosis was viral infection, probably RSV, and I was given a prescription for two cough meds. 

I managed to drag myself home and collapse in bed for a while. I only ate two tiny bites of dinner and went back to bed. I felt absolutely lousy and my bedside table looked like a pharmacist's counter.

By 10 pm my cough turned bloody and I continued with that every 15-20 minutes through the night. When I also started getting sick to my stomach (I know I was swallowing some of the blood) and had major chills and cold sweats, I woke Daddy up and told him I needed to go to the hospital.

Well, they got me back pretty quick (not as quick as you, I wasn't that bad) and ran tests and labs. Labs were totally wonky and CT showed bilateral lower pneunomias. Plus I just could not keep my blood pressures up. Yay for sepsis?? I spent the night in the ICU to stabilize my blood pressures and now I'm on the floor. 

The good news is they caught it really early. The bad news is I'm a much better medical parent than patient.

Yuck. I hate being weak, being stuck in bed, the exhaustion that hits so hard just getting up (with help) to go to the bathroom. And the interminable coughing is driving me nuts!

I also learned I find it easier to advocate for others than myself, and it's easier if you aren't tied to tubes/wires in a bed, and I can do it anyway. 

Fingers crossed that I get to go home today but I'm under no illusions that I'm all better. But I guess you know what that's like, don't you? 

I miss you, kiddo. Thank you for all you put up with so we could have you part of our lives for so long.

Love you so much.

Love,
Mama

"It is not the mountain we conquer but ourselves."

~Edmund Hillary