Rare Genes Day

Hey there, my rainbow colored zebra...

Today is Rare Genes Day, and I wore my jeans in honor of you. (I also spilled lunch on them, but that's a different story.)

In medical school, future doctors are taught that "When you hear hoofbeats, think horses not zebras." It's very unlikely that a headache is a stroke in a child, or a pain in the leg is bone cancer. It's usually just a headache, or a pulled muscle. 

But sometimes...

Sometimes it's a zebra. 

And every once in a great while, it's a rainbow colored zebra.

For those of us who encounter such a creature, it's life-defining, soul refining, beautiful and terrible all at the same time. 

I remember telling a friend that prior to you coming along, I didn't really believe that there were things doctor's couldn't fix. She laughed at me (she's a doctor). And I mean, I knew "bad things" happened to people, but it was to other people; your aunt's sister's cousin's classmate, or something like that. Not to my close friends and family, and certainly not to me.

But still, what joy and light you brought to my life, and to the lives of all who knew you. 

Love you, kiddo.

Miss you too.

"Death can only rob us of the future — memory embalms an unperishable past."

 ~William Ellis

 

Unsung Hero

Hey kiddo,

I went by your spot today, that's nothing new. But we had a big windstorm that came through last night and today two of your pots of flowers had blown over. It grabbed at my heart to see them and I went over to straighten them. 

It looks like your Mary has come by. She mentioned that she had ordered some butterflies for you and there was one, gently waving in the breeze. 

Your four seasons prints hang in my office, done with your hands and feet back in 2015. I'm so grateful they didn't end up selling at auction and I got them back. And there's a windchime with butterflies in my other office. You sent me back to school and brought me to social work. It's fitting that there are reminders of you with me. 

Last night was Michael's wrestling banquet. It's been such a rough season for him. He barely even started, and I didn't even get to see him in person, before you left. And less than a week later, he injured his knee and that ended his season. But he stepped up anyway, running the computers, filming other wrestlers' matches. It was hard. He wanted so much to be out there on the mat; not at the table or in the corner. But he did what he could for the team. I mean, he could have just stepped down, quit. But he didn't.   

And last night Coach recognized him as the "unsung hero." He's an amazing young man, just like you are. I don't know how I was so blessed to have such great kids. You and every one of your siblings have blessed my life so much. 

Oh, Aaron, I miss you. Tonight as I got in the car after straightening your site, it just ripped me. I screamed, and cried. It didn't last long, only a couple blocks. But the agony...  It felt like my heart was breaking all over again, and my arms ached with the emptiness.

Most of the time, most of the time I do okay, maybe even just fine. But sometimes... 

I love you.

“Those who say that we’re in a time when there are no heroes,
they just don’t know where to look.”

— Ronald Reagan

The Whole Trip

Ever have God reach out and metaphorically smack you? 

Or maybe He was trying to gently teach me?

That's probably more like it. It was gentle, but very impactful.

This weekend was Stake Conference. A bit bittersweet (like most things right now) because for the past 13 years, we've gotten a link to the February conference and watched at home. It was too dangerous to take you out to such a crowded place. You'd go in person in August, but not February. And this year, well, we were there and you were not. 

I didn't want to go. Honestly, if I hadn't already been dressed because of Mark's funeral that morning I probably wouldn't have. But I was and I did. Most of it went right past me, but then President Madson said something that really hit hard. "I can only see as far as the headlights, but I can make the whole trip that way."

I can make the whole trip that way...

I do okay with this most of the time. If I think about getting through the day or the week (I've progressed past minutes and hours, that's something) I can see that. Months are still hard. But the idea that it's going to be years and years, decades, until I see you again? That crushes me. 

But I can do a day at a time. 

I can only see as far as the headlights, but I can make the whole trip that way.

Then afterwards, I was talking to a friend (because who wants to fight traffic getting out of the lot anyway). She asked where you were and I was able to tell her. I told her I go by your grave almost every single night on the way home from work, and she said she does the same for her father's. He passed just over two years ago.  I told her I don't always get out; I don't even always stop. She said the same. It's almost like she's checking up on him. Me, too.

That conversation did so much to help normalize what I'm doing, feeling. I mean, I keep telling people there's no "right" or "wrong" way to grieve, but sometimes I wonder if I'm doing it "right." 

I guess if I'm still trying to move forward, keep living life while also honoring yours, I am.  

One step at a time...

"I can only see as far as the headlights, 

but I can make the whole trip that way."

Dennis Madson

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 

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

 

 

 

 

 

 

Lasts...

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

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

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

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

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

Valentine's Day

Today was kinda weird.

I mean, in some ways every day is weird. 

But today I was at home alone, all day, for the first time since you left. 

I spent it working on going through things and trying to get stuff straightened up.  I decided to tackle your room. The plan is to get the carpets cleaned and then move other furniture in, including a curio cabinet for some of your memories. Most of it was "okay" but then that little sticky got to me. 

I took down your name sign that a child life specialist made several years ago. I did the blankets and pictures and everything, but I also put them in a bins to take back out again when we get the curio set up. The only thing left in this corner is the shadow box that Holli put together.

But that sticky...

I threw it away and went to take the rest up to the closet where the rest of your toys and clothes and blankets are.  And I lost it. 

It hurt so bad!!! 

That sticky was there so that in an emergency no one had to look for the ambu bag. Regardless of who was in the house, the bag was accessible and easy to get to. It was my security system, your safeguard. It was used, a LOT.

And now it's not needed. 

But maybe I  still need it. So I went back downstairs, fished it out of the trash and put it in my office, inside one of my cabinets so when I need to see it, it's there. 

It's not in the trash. 

I'm just not ready. And that's okay. 

I'm not going to push harder than I am able. I go to work. I function (mostly) at home. I'm starting to be able to get out of bed at a reasonable time. I don't even completely break down every day. 

I miss you, terribly, but I don't think you would want me to be incapacitated. I feel like honoring you and your memory means being able to move forward and at some time, find joy again. 

However, for many, many years I've felt that in order to move on from loss, any kind of loss, we have to be able to mourn the loss of the dream we had before healing can take place.

So I will mourn you when the feelings come, and I will hold on to the things I'm not ready to give up. Frankly, if I even think I'm not quite ready to move something on, it's in the closet upstairs, or in my room, or a few other places.   

I love you, kiddo.  I miss you.  You have been an integral part of my life for so long, intrinsic to my very being, and the amputation has been excruciating. I've heard of phantom pain in amputees. Maybe that's part of what I feel, why I sometimes head into your room, why I have a hard time being out of earshot of your room. 

So it's Valentine's Day, and I decorated your grave with hearts on stems and a balloon. 

I love you. I miss you. 

“The most important business of life is love, or maybe it’s the only one.”

– Stendhal 

Do I Dream of You?

Hey Aaron,

I wonder, do I dream of you and not remember?

Do you come and do we laugh and play?

Is that why mornings always feel so much better?

I only remember dreaming about you twice since you left, and it's been a long time. But then I don't remember much about my dreams anyway. And in the mornings, life looks pretty good. I have energy and optimism. It's still a bit hard to get out of bed, but that may also be because I don't have to (or get to) do an hour's worth of treatment and meds before I can start getting ready. 

And generally the day goes pretty well, although I do get tired. But then the evening comes.

And I drive home from work.

And I know you're not there at the end of the trip. 

But that's the odd part, too. I mean, you're not there in the morning either, but somehow that's not hard.

Your teacher sent me the slideshow they used to tell your classmates about you. Some of them also added their comments about how they missed sitting by you, and being with you in class. They said they were sad, and they liked looking at pictures of you. 

I miss sitting by you and being with you, and I like looking at pictures of you.  

It's hard. 

So if I do dream of you at night, and just don't remember, maybe that's okay. I know you still love me, and I still love you. 

And it's that love that carries me. 

“Unable are the loved to die. For love is immortality.”

— Emily Dickinson

Are You Dancing?

Hey kiddo,

For over 13 years I ended each night by telling you I love you and tucking you in (sometimes several times). Somehow I need to continue that, in whatever way I can. 

I go by your grave almost every night, just to see the lights shining above you. It should start getting lighter at night, but right now it's still pretty dark by the time I get there.

A coworker asked about you today, and me, and how I was doing. 

I told her I'm mostly okay, most of the time. I get a few good days and then it's rough again.

But the pain and sorrow is all for me, not you. Does that make me selfish? Maybe...

I know it was your time. You were amazing. You held on to the end, much longer than any of us had any right to hope for.

She mentioned that someone told her it gets bad when the cards stop coming because it means others have all moved on.  As I thought about that, I realized it's been quite some time since one came, and it made me a little sad, because she's right.

And then when I got home, there was a beautiful card from your cardiology team. I don't know if people realize how touching it is to get these notes. I know I used to think it was "too late" or whatever, and it would be too weird to send a card. Now I know that's not true. 

I cherish the evidence that you're loved and missed. 

Today I was looking through old blog posts. I seem to be doing that a lot lately, reaching for you through memories. Anyway, I found this one from 2017 when I crammed two weeks worth of heart advocacy/information into one post. The dance at the end made me laugh. You could have rivaled Elvis with those hips! 

I hope you dance among the stars. 

I love you. 

Death is your dancing soul returning to the heavens.

~Terri Guillemets

February is Hard

Hey kiddo,

How are you? Are you playing? Singing? Jumping? Running?

I'll be honest, I struggle with February 11th. It was 14 years ago today that I was scheduled for the routine 20 week ultrasound.  I was so excited to see if you were a little boy or a little girl! I mean, I know they check other things, but that's the real excitement, right?

Yeah...

So. Much. More...

And it's been seven weeks since my world rocked again. I'm not sure any day in between hurt as badly as those two. 

We're coming up on two months since you were here, and 5000 days since you were born. Two years since your really bad admit when things were awful.

I miss you so much.

I'm listening to Jealous of the Angels and I am. I was looking through pictures of the last 5000 days, and I think I got pictures of you in front of the Christmas tree every single year, including 2014 when you spent Christmas in the PICU. Except this year. We got the tree up and everything, and I thought, "oh, I ought to just do it" but figured there was plenty of time.  

And there wasn't.

And there won't ever be another chance again.

And that's what hurts so bad. All the memories we won't make anymore. All those days and months and years until I see you again. 

I'm trying, Aaron, I really am. 

I want to honor you, your memory, your life. I don't really know what that looks like. 

So grateful to be your mom. 

My precious son...

“I miss the memories we’ll never have.”

 - Ranata Suzuki 

Sunshine and Shadow

Hey Aaron,

It looks like I get a couple good days (or maybe days when I'm totally distracted) and then it hits me in the gut again that you're gone, and you're not coming back.

Today is one of "those" days. 

It probably doesn't help that I'm still sick, but whatever.  

Your van has some interest, and I'm realizing that it's the last "big" thing of yours that's here, except your love and your influence of course. Without that, without the life lessons you taught so lovingly, I don't think I could possibly go on. 

It's been seven weeks, seven weeks!! since you left. It's so hard to wrap my mind around that.  And yet time continues to march on, without you. 

I don't look for you in your room anymore, maybe because it's so empty. Your bed is gone, your wheelchair is gone, it's sooooo quiet. The rocker that Grampa made for us is still in there and sometimes I sit and rock and think of you, usually with a smile on my face.

The part I haven't figured out yet is that I don't have to be listening, or make sure someone else is if I leave the general vicinity.  Like I go into the garage, or outside, and fight the need to hurry back in. Now I can take all the time I want. I don't have to hurry home from work, from the store, or make arrangements for nursing coverage to go to things for your siblings. There are no alarms, no machines whirring. I often go by the cemetery on the way home from work. Today I drove by and the snow lay so smooth, lightly mounded as if a blanket covered you. 

We finalized your headstone and it's beautiful. But it broke me again when I sent the coordinates for your spot. How do I have a deed to a burial plot for my baby?!? 

Today Facebook reminded me of a conversation I had with Michael, 13 years ago. 

My 4 yr old just asked if Heavenly Father and Jesus listen to him when he prays for Aaron. Oh yes, my son. They do listen. And he prays for his little brother all the time.

Now 17, he's preparing his mission papers. He prayed for you his whole life. And for the first many years, he didn't ask for blessings for you; he thanked God for those blessings that he expected to be manifest.

Before you were born, he would thank Heavenly Father that his baby brother would come home healthy from the hospital. So many thought that was just a cute prayer (because after all, don't all babies come home healthy from the hospital?). It brought me to tears because what they didn't know was that he had been told you would probably die and not come home. I think a big part of your long happy life was a direct result of Michael's prayers. The two of you have such a special bond. He's the only one without any memories of not having you here. He wasn't quite four when you were born.

He has a necklace with an A on it that he wears. Yesterday a coach was teasing him and asked what it stood for, and he grinned and replied, "Aaron, for my younger brother." That brought coach up short. Now, don't get me wrong, he's an amazing man! Michael loves him. But he loves you even more.

So I guess we just keep on going, trying, breathing one breath at a time. I know there will be good days and bad days, and already they're starting to balance each other, for which I am grateful.

It certainly doesn't mean we don't love you, or miss you more than anything. I think it means... actually I don't know what it means. Maybe that we're being carried by those who still pray for us, and by the love you gave so freely.

Miss you, kiddo.

Love you so much.

“It is the capacity to feel consuming grief and pain and despair

that also allows me to embrace love and joy and beauty with my whole heart.

I must let it all in.”

— Anna White

Dance, Sing, Laugh, Love

Hey Aaron,

Have you been watching Matthew dance this week? He's pretty amazing! We went tonight and I wore a mask and didn't hug him after. Whatever it is I've got is pretty miserable, but it's not Covid (I've tested a few times) and it came on way too slow to be flu, but yuck. I really don't want to spread it.

Anyway, it was so fun watching him. I love watching you kids have fun whether dancing or playing sports or just laughing together. And you had some of the best laughs! Were you there watching too? You loved going to ballroom competitions and grooving to the beat. One coach said he thought you had better rhythm than some of his dancers, and I bet you really would have gotten into these songs. 

Today, I also transcribed my talk from your funeral, and Michael's life sketch. Oh baby, I miss you. And I miss the me I was before you went. Now I'm not even quite sure what's changed, but I know I have. Maybe one of these days I'll put that into your blog so it doesn't get lost. 

The house is quiet now, and as I came into your room tonight, it looks so big. Even the entryway looks bigger because your wheelchair and all the plugs for your equipment are gone. I mean, they have been for several weeks now, but still it kinda catches me by surprise. 

I actually am doing pretty well, as long as I don't think about all the months and years before I see you again. That part still guts me and rips me open. So I try not to think that far ahead, just focus on getting through each day, breath by breath. 

Facebook pops up with memories each day. Some are hard, like the one from two years ago, when we almost lost you and your decline started in earnest. Others are kinda funny. In 2019 I wrote about "My Vegetable" (you can click the link to read it) because that's what a lot of parents are told will be their child's reality. I finished that one by saying that you were definitely not a vegetable. You might be a nut, but not a vegetable. 

You were so full of life, of love, of laughter. Those memories make me smile through my tears. I walk down memory lane and you're alive again, if only in my heart. 

Love you, little man. 

Miss you, too. 

No one ever really dies as long as they took the time to leave us with fond memories.

~Chris Sorensen 

I'm Sick

Hey Aaron, I'm sick.

Like I feel lousy. And for the first time in over 13 years, I'm just focusing on me and being sick. 

I have no worries of passing it on to you, or trying to care for you during it, or whatever. I actually don't remember the last time I was sick. I mean, I did have Covid in October 2022, but since then, I don't remember feeling yucky, which is a real blessing. Since we essentially had no night nursing for the last year of your life, I was your nurse as well as your mom. 

It's not Covid, I've tested. But ugh, I'm congested, my lungs feel tight, and I ache.  Like I said, yucky. 

In other news, I think we've got your headstone designed. It's beautiful. At the end of March we have to take down your temporary markes so I wanted to get it done. I don't know that it will be in place by then, but it should be close. 

My sweet friend has been helping me with it. We've gone back and forth with several ideas, but when she sent me the latest version today, it just looked perfect. 

My sweet boy, I miss you. It's really quiet here now (except I can hear your nephew crying downstairs). Jonny, Avanlee and Elend left to see her parents, Michael is at the school and going to play church ball, and Daddy hasn't made it home from work. I left early today because I felt so lousy. It's hard to focus and help others process hard things when you feel bad yourself. 

When I got home mid-day, it was just before Jonny, Avanlee and Elend were leaving for the airport. Linnaea and Elend were chasing each other around the house and little Barrett was in his mommy's arms. It did my heart good to see them, the next generation, cousins playing together. But I also felt old.

We're going to be empty nesters this summer. That seems so strange! I mean, it happens, it's supposed to happen, but most people can see it coming from a long ways away. Somehow, I didn't expect it. Somehow, I thought you'd be here. I really couldn't imagine you not being here. And now, well, you know...

I did refresh all the batteries in my candles tonight. I need the light in the dark corners of the room. It's peaceful, calm, and brings solace to my soul. 

I still talk to you every night. Your room is getting emptier and emptier. Eventually (maybe sometime soon) I'll get the carpet cleaned in there and we'll start putting furniture in. But I can still see you, sometimes, in there. You're part of me and always will be. 

Miss you, little man.

Love you even more...

"I think when loved ones die, we absorb something from them 

that makes us who we are so we can continue on."

 ~Reginald VelJohnson

Heart Month

It's heart month, kiddo.

And for the first time in 14 years, yours is whole. 

Mine isn't, but yours is healed. What does it feel like to be free? To run and play and not be confined by a body that doesn't work the way people think it "should?" 

Most years I've tried to post regularly, at least on Facebook if not here on your blog. 

But this isn't most years. 

It's going to get really quiet tomorrow. Jonny and Avanlee and Elend have been here since just a few days after you went Home. Tomorrow they leave to visit with her family and then they'll be back for three days and leave for Saudi Arabia. 

It has been great having them here, having Elend here. He's so energetic and fun, and has so much life in him! My heart has needed this. 

It's not quite as sharp, at least all the time now. But grief is weird. I can be okay, maybe even just fine. I can talk about you, laugh about you, and then something smacks me upside the head and I'm devastated again. So I try to roll with it. On Sunday I think I teared up a couple times, but overall was okay. But Monday...  Well, Tuesday I went to work with swollen eyes. And then yesterday we got the notice that you had been unenrolled from the health insurance, but you "might be eligible for COBRA coverage; check with your employer." Um, don't think you need that. Don't think health insurance is a "thing" where you are. And that's good.

My brave warrior, you did what you needed to. Maybe part of my struggle right now is that two years ago, yesterday and today, were the first times you were so very critical, so close to leaving, and I remember telling you that you couldn't die in February. February is cold and dark and also when we first learned that you were coming with something "extra." And while I came to love and appreciate all the joy you brought with that extra love chromosome, at the time I wondered if I would ever feel hope again. 

You know what's crazy? When things went down two years ago, you were in the PICU overflow and they quickly moved you into the center of the main unit, not sure if you could even tolerate the stress of the transition. In December, you were admitted into the main part but in the back and shortly transferred to the overflow. To the Very. Same. Room you had been in that time.  When we moved in there in December, I quipped that it was a good thing you weren't actually critical 'cause I didn't want a repeat of the last time. Those are the only two times you've been in that specific room. And then when you were moved to the center of the unit, again, it was the same room too! It has made me wonder... 

Every other time you've been sick, Every. Single. Time, I've told you you had to keep going, keep living, get better. I wasn't ready. This time I didn't even really think it was a thing, or maybe deep down I knew. Maybe that was it. My soul recognized that you were tired, and I was starting to do "to" you instead of "for" you. I had always promised you that when that time came, I would let you go. And I guess I did.  

You ran your marathon, Aaron, and you even kept going beyond. I hope someday I can be half as brave and valiant as you. 

Miss you, my son.

Love you even more.

He died that day because his body had served its purpose. 

His soul had done what it came to do, 

learned what it came to learn, 

and then was free to leave. 

~Garth Stein

Decorating Helps Me

Years ago I tried to leave your Chirstmas tree up year round with the idea that I would decorate it seasonally. I think I "might" have made it through fall, maybe Halloween, but I know by the second year, it went months and months without changing, and I decided to stop.

I mean, you were here, and you were staying. 

And I'd gotten to the point where I was planning for life and not death. 

I expected you to be here, pretty much forever, mostly...

I mean, I knew, sorta, kinda, that you wouldn't be, but still... 

And now you're not. 

So yesterday I stopped and bought Valentine's decorations for your grave. (How is that even a sentence?)

It helps me, really. I actually bought for Valentines, St. Patricks, and Easter. And a couple of solar lights, too.

I had stopped at the cemetery a week or so ago at night and it was soooo dark. I mean, it is a cemetery, but still. I had to use a flashlight to find you. That hurt. 

This morning I went by before going to work and put your things out. Tonight I drove by again and there it was, shining in the night. 

It does my mama heart so much good to be able to find you in the dark. 

Life seems so dark without you, having that little bit of light gives me hope. I know, in both my heart and mind that you're okay, you're more than okay. You are free, happy, able to run and shout and sing. 

You aren't there, not really. That's just your earthly shell, but I love that earthly shell as well. So I will tend your grave because I can no longer tend to you. 

And we're still working on your permanent marker. 

“Those we love and lose are always connected by heartstrings into infinity.”

— Terri Guillemets

Seems Like a Bad Dream

While on my lunch break today my phone rang.

I still always answer it if I can, so I did.

It was the pharmacy for new inhaled antibiotic that we'd been fighting for.

They asked for you...

Oh, boy...

I softly told them that you had passed away just before Christmas and we no longer needed it. I think she was a little shocked, said she was sorry, and then said, "have a good day." (Pretty sure it was just a habitual response, not intentional.)

I don't miss all those phone calls, multiple each month, to get your medicine, food, diapers, and all your trach supplies. But I miss you, and if making those calls meant you were still here, I'd do it in a heartbeat.

Last spring I fielded a call while with some of my classmates. When I finished, one said I needed a case manager. I quipped back, "I am his case manager."  She laughed and said, "I know, but he really needs someone so you don't have to." Frankly, she's a pretty awesome person and was just catching a glimpse of what it was like. You did need a case manager, and I was offered a nurse manager, but honestly, then I would have had yet another person to follow up on to make sure the ball didn't get dropped. 

I knew I would get things done, and I did.  You had four different pharmacies. We were trying to add a fifth. I called one number for food and feeding supplies, another for diapers, and yet another for oxygen, trach and vent supplies. And that was just for your supplies. It didn't take into account any of your doctors, and there were several of them.

But you were worth it, every minute! Every frustrating, long encounter as I answered the same questions (for the same people) over and over. 

And I don't regret a minute of the energy and time I spent for you. 

Tonight I stopped and got some things for your gravesite. I'm hoping to get out of here early enough tomorrow to take the Valentine ones over before I go to work. 

It's dreary right now, rainy, dark, cloudy. It matches my mood, I'm afraid, almost like the sky is crying with me. 

Sometimes this feels like a dream, a bad one. And sometimes your life feels like a dream that I'm tryinig to get back to. 

Either way, it's hard to reconcile my before and after. Something fundamentally changed in me when your heart stopped.  And I don't know how to fix it. 

Your hospital gown still smells like you.

“I had no idea that you would be gone in a blink of an eye –
I miss you with all of my heart.”

- Unknown

Memory Lane

Hey, Aaron, I've been going through old posts and reliving memories of you. I'm so glad I wrote things down, and I wish I'd done more.  A few months ago I realized you were almost 5000 days old and I marked it on the calendar so we could celebrate. That day is coming up, and I'm not quite sure how to face it. 

But today I remembered you...

I remembered when you got your Tobii and you talked and talked and talked about everything! You used it to tell a classmate "good job!" after a presentation. You told the principal that your test was boring, and your teacher was boring! The day after you stayed up until 4 am playing, you announced you were "tired and grumpy." When Linnaea was born, you navigated away from what you were supposed to be presenting to tell everyone, "Baby girl! Baby girl! We have baby girl!!" Your teacher suggested that we get you a t-shirt that said, "Moving my seat won't help, I talk to EVERYONE!" 

But it wasn't just talking. You understood. When I was talking with someone about which of your siblings would want to learn to change your trach, you just listened, until we got to Michael. You started nodding your head. When I asked you, "So do you think Michael wants to change your trach?" you nodded more and more. He wasn't around so I asked him later and his response was "of course I want to!" 

You knew your brothers well. You knew that while they all would have done anything for you, you also were aware that some were more comfortable with medical issues than others. 

Of course, when Michael did try to change your trach, you were a nut! Instead of lying still with your chin up high like you always did, as soon as he pulled the trach out you started doing crunches, completely hiding the stoma he needed access to. Silly boy. You loved to tease him, and he loved to tease you. I love the bond you have. 

But in reliving those memories, I could also see the beginning of the end. I laugh and smile at the earlier memories, but the last two years are much more difficult, painful, poignant. 

My brave boy. 

You were so strong. I could see the decline, the struggle, but not nearly as well as I can now, looking back. 

I remember feeling like your 12th birthday might be your last.  It wasn't, but it was the last we could hold a party for. And unlike any since your first, you were really tired and slept quite a bit. Your 13th birthday you were in the hospital, so sick. We had almost lost you just a few days earlier. 

Your body was slowing down; it was tired. Your big wonderful heart was struggling. Your digestive system wouldn't work right. Before that, we used to joke that you had a cast iron stomach. You loved a full tummy and moved your food right on through. But not the last two years.  

In February 2022 when you were so, so sick, when you came right to the brink of leaving us, it damaged you. Your brain certainly took a hit, but so did your heart, your lungs, pretty much everything. And yet, you soldiered on. 

My sweet boy, thank you, thank you for everything you gave, everything you taught, just everything. Thank you for enduring, for fighting, for staying as long as you did. 

Miss you, miss you so much. 

Love you even more...

“It's my heart that is tired.
A thirteen-year-old heart shouldn't feel like this.”

― Markus Zusak

Hope

Your room looks so big now. Your bed went to a little girl who needs it. 

Daddy and I scrubbed food off the walls, and the ceiling. I'm not quite sure how it got up there, but I suspect it was one time when we vented your tummy and forgot to cover the syringe. 

Linnaea just came up stairs and when she came into your room, she asked "Where are we?!?" I told her it was your room but you didn't need all the things anymore because you were with Heavenly Father and Jesus now. And that seemed to make total sense to her.  It makes sense in my brain, but my heart is still struggling.   

I look at the picture now and see the shadow of the two butterflies that still hang from your ceiling just at the top. The picture another T18 family gave me that says, "I can do hard things." (I need that reminder, this is hard!) The blanket Holli made for SuperAaron, with butterflies on the back of it, the one the Activity Days girls made many years ago to represent the Comforter, and the Minion on your cabinet. Daddy and I both laughed at that one. It doesn't look like you, per se, but it certainly conveys your spirit! 

And the pink sticky that says "Ambu bag inside." That one isn't needed anymore, but somehow I haven't thrown it away. 

I listed your van for sale today. We don't need it and someone else will. I hope it goes to someone who gets as much joy as you did. Cleaning it out actually brought a smile to my face as I remembered how wonderful it was to take you places, to see you light up and laugh as we'd go. And now you don't need those helps anymore. 

I was at the hospital again today for the open house. I saw the infusion rooms with the patio just outside and remembered how we advocated for that so that children wouldn't have to be confined to the rooms,  and the rooms themselves have big wide windows so even inside they can have sunlight. The NICU rooms have mini fridges for Mom's to put their breast milk in. And the trauma rooms have x-ray built in! Such a blessing for both the children and the staff.  

While there, I picked up a small blue stuffie. I named it "Hope." 

Hope for the children and families, hope for the staff, and hope that I can continue your legacy of hope. 

Hope rises like a phoenix from the ashes of shattered dreams. 

~S.A. Sachs

Ribbon Cutting Time

Hey Aaron,

Today was the ribbon cutting at "your" hospital. Tomorrow are open house tours and then it starts serving children on February 12. 

You're not there, but yet you are. 

One of the architects stopped me today asking if I remembered him. He laughed as he recalled the sketch plans, and then the blueprints and how we would all discuss different ways to move things around. 

And now it's a reality.

He teared up when I explained that you wouldn't be coming after all. 

One of the speakers mentioned how at Christmas their family had done a "little" thing. They went to Primary's and distributed Minky blankets. Maybe it was little to them, I don't know. But I was given a beautiful white blanket mid-day on the 22nd and went to sleep cuddled under it.

Until I was woke at midnight, and well, you know how the rest goes. You went too. And that blanket came home and helped ground me, helped my own body not fly apart, kept me in the here and now (even though I really wanted to be in the past, where you were still alive). 

So to me, not a little thing at all. 

It is such an amazing building, Aaron, and I can see your fingerprints everywhere. It will bless the lives of countless children and their families. You bless the lives of all those people, even though they never knew you. 

I'm still on the Family Advisory Council and now serving on the exec team. The other two ladies I get to work with are amazing, and I'm so grateful to serve with them. And my service is directly a result of you. Without you, I would never be part of this, would never have helped with the hospital design, would not have gone back to school. I would not be the person I am today. 

Tonight a dear friend came and gave me a massage. I needed this so badly. I mean, I kinda knew, but as she started in on my shoulders, I realized the knots that were there! What a blessing she is...

What a blessing you are, too.

“And if I go, whilst you’re still here…

know that I live on,

vibrating to a different measure behind a thin veil…. ”     

~ Emily Dickinson