Saturday, February 24, 2024

Grief Work

Hey kiddo, it's been nine weeks today, two months yesterday. It was eight weeks ago I last saw your face. It still seems surreal. Will it always? 

This morning I went to a celebration of life for a friend's husband. Jodi and Mark have been such a support to me, and to you. As I came in, Jodi looked at me and said, "Oh, it's too soon for you to have to go to a funeral."

I just hugged her and whispered, "It's too soon for them to be gone." Oh...

I've been doing a lot of grief work with some clients lately. My friend and supervisor mentioned that she was sorry things were working out that way, but I assured her it actually is good. I'm there with them, present 100%, but as I reflect later, I find myself processing more, too. 

I keep realizing that grief is weird, and so is our culture in some ways.  We are uncomfortable with grief, pain, tears. There's the sense that there should be a time limit. Most people's lives move on, but those whose lives have been intricately intertwined are left with a hole that doesn't heal, not really. And we're left behind, simultaneously locked in the past and yet dragged into the future. At least that's how it feels at this point. 

When we first learned of Aaron's diagnosis, a friend brought me a book, Tear Soup. It tells the story of Grandy, an "old and somewhat wise woman" who navigates her own loss. As she moves through her grief, she adds what brings her comfort, and notes repeatedly that there is no "right" way, or "one" way to travel this road, although there are often similarities.  

At the end, there are cooking tips for the cook who is reading, for the child cook, for a couple, for a friend of a cook. The one that hit hard was:

"Being at work may provide a relief from your grief, but as soon as you get in the car and start driving home you may find your grief comes flooding back."

Oh boy, did that ever hit home.

I am finding that as I start the car after work, it all hits. Hard. But sometimes the tears go (almost) as quickly as they come. But that wail...

Why can we not do that unless we're alone? I mean, I can't. It's not a won't, it's a can't. I can't release it if there is anyone else around. I did it when he was a week old and I was alone while everyone else was at church. I have screamed and yelled and wailed many times in the car. There is just something about being alone that allows the deepest grief to flow. 

So I'm working through things. Sometimes the ache still brings me to my knees. Sometimes I laugh through my tears.

And sometimes I'm at peace with it.

I love you, Aaron. 

I love you so much. 

"I've learned that there is something down deep
within all of us ready to help us survive
the things we think we can't survive."

Grandy - Tear Soup 

Thursday, February 22, 2024

Wind Chimes and Memories

Are you in the wind?

Are you speaking to me?

Sometimes it just hurts so bad, I miss you, I miss you so much! 

It's actually been a couple days since I really broke down, but right now, it's hard to see through the tears. 

Aunt Patty and Aunt Terry sent me wind chimes. I remember as a little girl sitting on Grandma Mary's porch in Denver listening to all of her wind chimes. Grandma Mary is your great-great grandma, my great grandma, and their grandma. Do you hang out with her? She was one gutsy lady, but so loving too. 

So I love wind chimes. They remind me of family, of childhood and of unbreakable bonds. 

And as I sit here, hurting, aching with missing you, I can hear them in the wind, and it almost seems a gentle chiding. 

A verse is inscribed on them: 

A limb has fallen from the family tree
That says grieve not for me.
Remember the best times, the laughter the song, 
the good life I lived while I was strong.
I was looking through medical records and I had forgotten so much. I'd forgotten that after your pretty rough first year, we found a more even keel. You frequently went four to six months without a hospitalization, one time nine months. And some of those interruptions were for planned surgeries and procedures. It all came to a screeching halt in February of 2022. Over the next 22 months, you were hospitalized for 200 days, and with not much time in between stays, not really. 

But my son, before that, you were so spunky, so vibrant, so energetic! And even after, you were strong, courageous, and found joy in life. 

I don't cry for you. I cry for me. It's been two months tonight since I last saw you awake. I thought we had more time. I really thought we'd spend another Christmas in the PICU and then come home.  I had occasionally thought about your funeral (but not in a long time). I never imagined finalizing your headstone.

I miss you so much... 

"Remember the good times, the laughter, the song,
The good life I lived while I was strong."
Author Unknown



Wednesday, February 21, 2024


It's weird how these lasts that I never considered are sucking me in.

Today Michael and I went to the pediatrician's for his mission physical. He's almost 18, and barring a significant illness or injury (please no), I'm done there. He will go back on Friday for his TB test to be read, and again in about a month for a final vaccine, but I don't need to be there. And then that's it.

We first went to see Dr. K almost 20 years ago when we moved here, and frankly, I didn't ever even consider that one day we would "outgrow" our pediatrician. It never crossed my mind.

But last night I realized what it was. Because of Aaron, I had his cell phone number and his nurse held my hand and helped me with sooooo much in the way of prescriptions and paperwork. 

And the relationship is over for all intents and purposes. 

It's weird. 

There was a medical student with him who had been in the PICU when we were up there. She was there when you left, and she remembered you. She reaffirmed how much you were loved there. 

And I no longer see my friends, all the connections I made during all of those hospital stays. I'll see some, occasionally, in my role on the Family Advisory Council, but it's still different. And it's not the nurses, or respiratory therapists, the ones we spent so much time one-on-one with. There was never a chance to say goodby to them either. 

It's getting quiet again here. I took Jonny, Avanlee and Elend to the airport to return to Saudi Arabia this morning, but Linnaea is up here right now.  And of course there's Sophie and Simba. They really don't go in your room much anymore.

When we were in the hospital, I would be notified that there was movement in your room. Both of them, each time they got up, would go into the room and look at your bed, as if to see if you had come home. Do they miss you, too? I don't know.

The weather is so gloomy. I miss the sunshine. It's cold and kinda dark. And all I want to do is curl up and veg. But there's still things to be done.  This is weird, and hard. I unpacked my hospital suitcase the week after you died, but this week that corner looked so empty all of a sudden. 

I miss you kiddo, but I think I might be learning to live without you, somehow. It's not very graceful, or easy, or whatever. But I'm trying, day by day, breath by breath. Sometimes I do okay, sometimes not so much. 

Underneath it all, you color everything, the joy and the sorrow. I never realized how the two could exist simultaneously, but they do. I ache for you, but I also am so grateful to have been given the privilege of knowing you, of caring for you, of loving you. 

You made me a much better me than I ever could have been.

Love you, kiddo. I miss you.

"Every parting is a form of death - as every reunion is a type of heaven."

~Amelia B. Edwards

Tuesday, February 20, 2024

5000 Days...

Last fall,  I was looking at your 1000 Day picture and wondered how long you had been alive.

So I plugged dates in the computer and found you would be 5000 days on February 20. 

5000 DAYS!!!

So cool!!

Let's have a party!!

In no way did I ever imagine December 23rd would interrupt those plans. Had I known, I probably wouldn't have looked up the date. But I did, and it's stuck now in my brain.

Day 1
June 13, 2010

1000 Days
March 9, 2013

2000 Days
December 4, 2015

3000 Days
August 30, 2018

4000 Days
May 26, 2021 

Day 4941
December 23, 2023

5000 Days
February 20, 2024

Such an abundance of blessings. How did we get so blessed to have you part of our lives? So much you taught: love, perseverance, forgiveness, fortitude, humor, and humility.  Putting together the video was a wonderful walk down memory lane. So very many pictures, and yet I wish I had more. 

Even now, your smile warms my heart. 

Love you so much. Miss you, too.

"You gave me a forever within the numbered days."
John Green

Sunday, February 18, 2024

Vicarious Resilience

I walked into my office on Friday and found my plant looking very sad (top left). Honestly, I almost cried myself. I couldn't believe it! It's one from your funeral and it just felt like yet another loss. I quickly (actually dropped everything and grabbed a water container) gave it water. And waited. And prayed. (Does it seem strange to pray for a plant?) 

By early afternoon it looked like the bottom left, and by the time I left Friday evening, it was back: shiny, vibrant, and firm. 

Resilient. Kinda like you over and over, until your heart said, "enough."

I'm tired, Aaron. 

Not sure quite why; I did sleep pretty well last night and it's not like I've done anything strenuous. 

Jonny, Avanlee, and Elend are back for a few days, and I love that they're here. 

Tomorrow is President's Day, so I don't have to get up. If you were here, we'd probably spend the day being lazy.  I might do that anyway. 

A friend today said that robins sing in the dead of winter. They don't do it for warning, or for courtship. They sing just to sing.

I'm starting to be able to sing again. Music speaks so powerfully to my soul, and sometimes it's hard. You were actually a few months old before I could sing to you, and I alternated during those hard times singing to you, and not being able to sing to you. It's just the way it was. 

We talk a lot about vicarious trauma. It's the shift in our viewpoint when we witness trauma experienced by others. It seems to go hand in hand with survivor's guilt. We see other parents navigate child loss and simultaneously feel guilty that our child live, and also realize that our turn is coming.

What we don't often talk about is vicarious resiliency. 

I watch other angel moms and how they navigate this devastating world.

I remember my Nana, and while I didn't know until I was much older, I found she had lost her first baby, and her first husband, and sent my Papa off to war. (Are you with them now? You share a middle name with Papa, both of you such incredibly strong, wonderful, loving men.)

My aunt has buried both of her boys. 

Somehow, these women are still standing.

I watch neighbors who have outlived their children and they still laugh.

So I borrow strength from others who have gone before. 

In some ways it's not that different from how I navigated this journey since we started, or even motherhood itself. I find other moms who've been there before. 

I'm hopeful that I'll be able to do that for others, at some point. Right now it still is so raw. Today someone tried to liken another loss to losing a child. She meant well, I know she did. She was trying to relate. And all I could do was leave as quickly as possible. It didn't help that she said my heart must be so much more at peace and not hurt nearly as much now that I didn't have to care for you all the time. I didn't even have words. Again, I know she was trying to understand and help, but it just didn't. It was like a kick in the gut, kinda like when someone else asked if I was excited to travel and do a lot of things this year that I haven't been able to before.

NO!! My heart doesn't "feel better now" and NO, I'm not looking forward to my new freedom. 

Sweet boy, I miss you. I'd give almost anything to have you back, except that wouldn't be fair to you.I keep replaying the last two years, the awful lab results, the hemorrhaging from your lungs, the sedations and paralytics and all. Yet you bounced back time after time. But not quite... 

I think my heart knew, even if my mind would not acknowledge it. Your time was coming quickly. And yet you held on until Andrew was home, and you even held on until school was on break. 

There was never going to be a good time to lose you, but if there was a "less bad" time, you picked it. My brave warrior, maybe I borrow some resiliency from you as well.  

Maybe you can teach me how to heal...

I love you, I miss you.

To heal is to touch with love that which we previously touched with fear."

   Stephen Levine

Saturday, February 17, 2024

Eight Weeks

Hey kiddo,

I'm not sure what to even say. I think I'm kinda numb today. 

I did finish one of the baby blankets and got the other one started, which I guess is good. 

I bought the yarn for Barrett's blanket back in November, just before you were discharged, the week before Thanksgiving, but somehow I just couldn't get it started.

And then when I did, after you left, I realized it was the same yarn I used for your blanket, which brought its own challenges. 

I tried, Aaron, I really did. But somehow out of the 25 granny squares (13 of them with teddy bears), I only managed to get seven done. And those were plain ones. It seemed like I would do anything except work on the blanket. 

So I gave myself grace and decided that maybe it wasn't the time for this particular blanket. 

Today I finished the one for Jonny and Avanlee and started Barrett's. I kinda feel bad. Barrett is almost 5 weeks old, but I'm hoping to finish it this weekend. And it's kinda a fun pattern and colors. I think he'll like it.

Someone came and drove your minivan today. It's hard to let that go, but at the same time, I really hope it gives another person the freedom to get out and about that you enjoyed so much. It's really the last big thing of yours that I still have...

It's been eight weeks. It's starting to not be quite as strange, at least all of the time, but sometimes it still knocks me to my knees. Today while I was out getting the new yarn, I also picked up pansies and a butterfly to put on your grave. When I got there, someone had left a stone heart on your marker. It feels good to know that others are also remembering you. 

Love you, little man. Rest easy. 

Miss you so much...

"Your memory feels like home to me. So whenever my mind wanders, it always finds its way back to you."

- Ranata Suzuki

Thursday, February 15, 2024

Painted Emotions

I drove past your grave with Michael tonight, and as we left, I told you, "Love you, kiddo. Sleep well..."  

You know, the same thing I told you pretty much every single night of your life. 

Except then I had to chuckle (through the tears that were threatening). I told Michael that unless things have changed drastically, you probably aren't sleeping.  Even if there is sleep in heaven (I kinda hope there is), it's night time, and you're a serious night owl. 

I watched Michael play church ball tonight, and David play soccer. I figure if I don't have to be home, if I have this newfound freedom (which I didn't want), I would go see your brothers. I have missed being able to see them. I'm working on blankets for your nephews and have to finish the one for Jonny and Avanlee before they leave next week, so I took theirs with me. As I sat there on the side, I realized the last time I crocheted during church ball was making your blanket. Oh, boy...

As I sit here writing to you, it's so quiet. I can hear Sophie breathing and her tags rattle when she moves. Michael's ankle pops as he moves it. The ticking of the clock across the room is distinct, and the silence almost rings in my ears. 

I finally turned off the camera in your room yesterday. Daddy mentioned probably a week or so ago that we didn't really need it on anymore. He's right, but still...

I painted today, too. A client struggled with fingerpainting and wanted me to join them. Art releases a lot of emotion and the combination of color with the sensory experience of the texture is powerful. 

A large heart. Blue for sorrow, but tinged with pink for love and yellow for joy. Blue raindrops with gray for numbness and still a little pink for love. Purple pansies for strength and a pink butterfly with purple and yellow accents. 

Honestly, I just did it. I didn't let myself think about it as I was doing it because I needed to stay present for my client. It was their session, not mine, but they needed support for the project so I did it with them. But now that I look at it here at home, well, it's cathartic. Maybe I need to paint more often. 

“Art speaks where words are unable to explain.”
– Pam Holland