Home

Dear Aaron,

It's been a busy week.

And to be honest, I've also been trying to distract myself.

It's hard living without you, hard living with the knowledge that you won't be coming back to me in this life. 

So this week, I've tried to ignore it.

But still, it's there, underlying everything. 

You're the reason Lucy's death tore me up. You're the reason we were at Dream Nights at the zoo. You're  the "why" I chose to go back to school, chose social work, and chose to work where I do.  And you are the reason I know, or at least am learning, to let others make choices. 

This week I scheduled Michael's first time to go to the temple, and I didn't even think to ask him which temple. I just chose the one down the road from us, 'cause that makes sense. But when I let him know (notice I didn't ask here either, I just informed him), he retorted that he should have some say and I probably scheduled the wrong temple. Wrong temple?? How can a temple be "wrong?" Except I did, and it was. 

Last summer we went to the Saratoga Springs temple open house. The Spirit whispered to me that this was my only chance to be in a Celestial Room with you. It was also the last time Michael took a picture with you outside of the hospital. Yeah, I scheduled the wrong temple. So then I fixed it. And I told a colleague that apparently, even with my training, I forget to allow some people (my kids??) to direct their own lives. I guess I'm still learning, right? 

Anyway, I've been pondering a bunch of things this week. I'm glad playlists don't get "worn out" 'cause mine has pretty much been on repeat for about six months now. There's a lot of songs about home and hope and gentle melodies. I still don't have a grasp on this; the ideas are still pretty nebulous, but I'll try to explain the thoughts that go through my mind. 

We often talk about you going Home, and home, either here or in heaven, is a goal. Most Fridays I'm the last one out of the clinic. It's generally a slow day anyway, and most are off early. I love my job, really! But my last client doesn't come until 5.  I can love my job and be ready to be done by Friday evening. Sometimes I'm a little envious of colleagues who leave earlier on Fridays and get to go home, but I still have work to do. 

You finished your work and went Home, and I miss you. You went Home. Someday I'll come too. But for now, I still have work to do here. Does that all make sense? As humans, we need things to make sense; stories are attractive because they have a beginning, a middle and an end. And I am still trying to figure this all out. It still doesn't make sense in my mind that a child goes Home before a parent, but I guess that's the difference between fiction and reality. This is reality, and it doesn't always make sense. 

Right now, sitting outside in the cool of the morning, I hear crickets chirping, birds calling, Simba's tags rattle as he shakes his head, Sophie's toenails scratch on the patio, and I miss you. Dew drops cling to blades of grass untouched by the rising sun, the green leaves form a border under a clear blue sky, and the hummingbird just zipped back to its nest from the feeder. It's beautiful out here, peaceful.

Your stone is now in place. I drove by after work on Monday and it greeted me, your smiling face, the grin that lit up my world and is now only in pictures and video. 

June 29, 2010

Fourteen years ago today we brought you home from the hospital for the first time. They sent you home to die. I knew it, and I actually welcomed it. Having you home was such a blessing. I could be with you all the time, not just for a couple hours a day. And I was desperate to make memories here with you before you left us. What an abundance of memories, of blessings, waited for us. It wasn't just a few days or weeks. We got just over 13 1/2 years of memories together. Your big kids made a sign for the yard. 

Were there people as anxious for you on the other side as well? Was there a big sign? A party? You did it, my son. You finished your work here. You went Home. I am so glad for you, and yet, this world seems lonelier, darker somehow, and I miss you. 

Love,
Mama

buried with love and starshine—

a grave ever glowing with memories

~Terri Guillemets

6 Months, Half the Year, and Another Angel

Leaving without you six months ago

Dear Aaron,

It's been six months since you left. 

Six months with no alarms, feedings, medications, hospital stays or doctor visits. 

Six months where I can't see you, see your smile.

How are you? Are you loving heaven?

Were you there when Lucy danced through heaven's gates Friday night? Did her face light up when she saw all her friends? Did you all pause and miss us down here? 

You know, Lucy was my step back into the PICU. I went to see her and her mom a few months ago when they were there. And now, almost exactly six months after you left, she did too.  I'm shattered, but I know it's nothing like Melinda is feeling. I feel helpless, and again, I know it can't compare to her pain. When our children leave us, children that we have poured not only our heart and soul into ('cause we do that with all our kids) but whose welfare consumes our every waking and sleeping moment, it leaves a gigantic black hole that seems to suck everything else inside. 

I don't actually remember not knowing Melinda and Lucy. I mean, I know there was a time because Lucy is younger than you, but still... It seems we were always friends. Maybe because you and Lucy have been friends since before time? Help her find her way around, okay? And both of you be close to us, too, please?

Last night I finger painted a scene that's been on my mind for a long, long time. I actually worked through it in my last training session 'cause you know since we have to practice and we only have each other, we each get to play the part of client as well as therapist. 

So many, many, many times we needed help transporting so we called an ambulance. Most of the time you were relatively stable, except I never did figure out how to bag you as well as drive. But a few times, you weren't, and we went lights and sirens. One time, I remember seeing those lights revolving off the jersey barriers on the freeway as we sped through the dark night, racing to get you to a higher level of care than I or the paramedics could provide. That was one of the few times I was also scared. It settled in me and it got to where the last few months, I couldn't hear sirens without breaking down. Thanks to an amazing therapist and hard work, that hasn't been a problem the past couple weeks, and yes, it's summer, I'm hearing them.  

So last night, I painted the final image. It's the lights through the window but superimposed are the words, "I am enough." 

And I am.

So are you.

We have to be.

Six months, and so many more to go...

Love,
Mama

“Grief is the price we pay for love. Every mother dreads that cost.”  

Sarah Sands

Summer Solstice Seems Dark

Dear Aaron,

I don't know what it is, but today is hard! 

I cried before work today, first time in a long time. 

I cried on the way home. One minute I was fine, and the next, well, not so much.

I sobbed at the cemetery.

I just don't know. 

It's one of those times that just grips my heart, reminds me that you really are gone, at least from my sight.

When I got to your spot, it was different. Your pinwheel had been moved to the other side, the butterflies were slightly different, and your stone and flowers had been moved forward. Green spray paint marked a rectangle on the grass. 

Then I noticed the orange construction-type flag with your name ... and your death date. 

That date...

Anyway, it looks like your permanent stone will be installed soon. How soon? I don't know. Maybe tomorrow?

I keep going back to the numbers. 13 years, six months and ten days on this earth. 26 weeks tomorrow since your eyes were last open, 26 weeks on Saturday since your last heartbeat and somehow, it almost seems inexplicable, somehow mine kept going. 

And six months on Sunday. 

It's summer solstice, the longest day of the year, and it seems like an eternity since I last held you. 

I miss you so much, my son. 

I just miss you.

Love,
Mama 

“To have been loved so deeply,
even though the person who loved us is gone,

will give us some protection forever.”

J.K. Rowling 

Rough Days and Mountains

Dear Aaron,

It's been a, well, I don't know what to call it, crazy? couple of days. 

Most of the stories aren't mine to tell, but it's been rough, mentally and emotionally. I find myself using my skills and training not only to "be with" others but also for myself.  

And then there's the cars...

BOTH the Crown Vic and Andrew's car went down, within 24 hours of each other!! Who knows what happened with the Crown Vic. I guess it just wanted a tow, 'cause once it was towed, it was fine. Sigh...

Andrew's car is frankly not safe to drive, probably hasn't been but he didn't know that. So we've been playing musical cars. But tonight he found one that he really liked, and the Crown Vic seems to be behaving at the moment. And tomorrow I drop off the title for Andrew's and it will be headed to a junk yard, so there's that.

But it's been rough, hard, unsettling at the very least. 

Are you here? Have you been aware? Helping?

I think you must have been, at least it makes me feel better to think so.

And today, man, I feel like I was in the car all day. Up to Salt Lake, back home again, down to south Provo and home. Back to Salt Lake, home, and then to Orem. And then before and after dinner, two trips to David's. But the thing is, I was there, able to help Andrew and Michael, be present. And I recognize that if you were still here with us, it would have been much harder on them.

They learned to do without me so many times because you needed me. And they learned to be with you. They made sacrifices because they love you and know you were and are worth it. But I think it's also good that I can be there with them now, too. 

I went to your site to return your temporary marker and your flowers, and found that the ground above you was scalped again. Oh, it hurts. I talked to a guy that's working there and he's going to try to make some adjustments, but honestly, there needs to be dirt removed from below the grass so it's not mounded so much. 

I feel like I'm complaining a lot here; I guess I am. 

But it's not all bad. Music from my playlist soothes my soul. As Andrew and I drove home, the
mountains stood out in stark relief against the sky, with the rays of the setting sun hitting them directly, and it was so beautiful that it took my breath away. 

We live in such a beautiful world. I love the strength of the mountains, how they remind me that I can be strong, too. I won't give up. I want you to be proud of me. We will keep moving forward. 

And I know you'll be there with us.

Love,
Mama

I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh from the Lord, which made heaven and earth.

Psalm 121:1-2

Father's Day

Dear Aaron,

It's Father's Day today. 

You have the best daddy. I did the medical, and he did the love.

You loved snuggling on his shoulder, reading books together, hanging out and watching Peter Rabbit over and over and over again. 

He held down the fort here, taking care of things, while you and I would disappear at a moment's notice to your "vacation home."

He misses you, too. He tries to be strong for me, but I know he hurts too.

Send him some love today? And tomorrow?

Today might be mostly okay. I mean, we've got church and then chaos here tonight as everyone (minus you, Matthew and Kensey) will be here. 

But tonight? Tomorrow?

Stay close, okay?

Love you so much!

Love,
Mama

“One of the greatest titles in the world is parent, and one of the biggest blessings in the world is to be one.”

— Jim DeMint

 

Waffles and 25 Weeks

Elend saw this and said, "Baby!" Linnaea piped
up and said, "That's our Uncle Aaron!"

It started with wanting waffles this morning.

But I wasn't home; I had to go pick up something from Home Depot. And then when I got home, the kids (okay, mostly adult kids) were on their way out the door to meet up with Jonny & Avanlee's family to play disc golf. So I offered to do waffles when they got home and texed Jonny & Avanlee about it.  Then Linnaea came upstairs to see me, so I invited her family.  David called; I told him. I called Mary.

Deborah, Bronson, Linnaea and Barrett. Mary. David.  Jonny, Avanlee, Elend and Sterling. Joseph and Sarah. Andrew. Michael. (Matthew and Kensey are in Wisconsin and moving into their new apartment.) And you... 

Were you here, too? I saw a butterfly on your birthday, and the hummingbirds this morning. 

Underneath all of this, I'm missing you so bad!! Those gentle waves from Thursday are building strength, harder, faster, pushing me over.

Friday night into Saturday again...

On my way home last night, I wondered if it was possible this is a very bad, very long dream. (It's not.) Maybe you were waiting at home and I needed to hurry to sign Holli out. (You weren't, I didn't.) 

Honestly, I did know that, but for a brief moment, I wondered, and I hoped, and it knocked me down all over again. 

This morning I didn't even want to move. Last night, I didn't want to sleep. 

And then by noon, I was busy, making multiple batches of waffle batter, scrambling a couple dozen eggs. The noise level was pretty intense with lots of laughter and exclamations, punctuated by squeals from Elend and Linnaea and cries and coos from Barrett and Sterling.

It's relatively quiet again, and the waves have settled a little. They're still somewhat intense; still more than they were on your birthday.

It's been 25 weeks. 25 weeks! And while the sun is shining, it feels kinda dark here. 

Facebook is full of the memories, pictures, even some videos. Most years it took me a few days to post, which means this next week will be full. I cherish them, and am devastated that there will be no more.

We're working our way through the Harry Potter movies. In speaking to Harry about his parents, Sirius reminded him that those we love never really leave us.

Are you still here? Do you miss me, too? 

Love you so much,
Mama

"But know this; the ones that love us never really leave us."

J.K. Rowling

The Boy Who Lived (And Lives)

Dear Aaron,

It's your birthday! Happy Birthday, Little Man!

Oh, I miss you. I can only imagine the celebration you're having. I mean, one of the main goals of earth life is to gain a body, and you did! You did in a marvelous way. Some may think that's a strange thing to say.  After all, while no one's body is perfect, yours had some significant challenges, challenges that made it so even the basics of life needed support.

And yet, your marvelous, perfect spirit was able to shine because of those limitations. 

You showed us how to truly live and love. And I am so grateful.

Today (at least at the moment) the waves of grief are relatively gentle. The lap at my feet, my toes, sometimes splashing higher, but for now, not overwhelming. 

We are being carried, I know we are. Yesterday afternoon, a neighbor came by for a visit. Last night Holli came by as did my sister and a niece. This morning early, a sweet friend left flowers on the porch. And I know so many others are praying for us.

I suspect you are, too. I think you're probably close. Please stay close, wrap us in your love. 

What a blessing it is to be your mother, to know you, to know that you still live, just not here with us. That part will always sting, but I guess it's through pain that growth comes. 

My valiant warrior, my hero, my boy who lived...

I love you. 

Happy Birthday.

Love,
Mama

A trip through 14 years of birthdays.

Goodbye may seem forever,
Farewell is like the end,
But in my heart's a Memory,
And there you'll Always be.

 

I Feel Lost

Dear Aaron,

I just don't even know right now...

I feel lost. 

I keep thinking about how 14 years ago tomorrow I went into labor with you, but you didn't show up until the day after.

I was so afraid, afraid you wouldn't make it.

And to be honest, afraid you would. 

I didn't know how to "do" special needs.

But it turns out, I actually did.

Love.

That's how you do it.

You love.

And I guess that's how I go forward right now, except mingled with that love is pain. 

It's very different than the pain of the c-section. I mean, that was bad, but there were pain killers and so on. There aren't any for this. I just have to feel it, to let it in, and let it out.

It's clean-up week at the cemetery. They leave things up for two weeks after Memorial Day, but then the next week anything that is not permanently attached is removed and discarded. I went on Saturday to make sure I didn't get distracted and forget on Sunday, so your decorations, your temporary stone, are all in the garage.

And your place looks bare, forlorn. I can't even put anything up for your birthday. 

So I guess we'll do what we do for everyone, and "celebrate" on the weekend. Friday night I'll put out the balloons I bought for you. 

You know, two years ago I had the distinct impression that it might be your last birthday with us. It wasn't, but it was the last time we got to celebrate with others. Last year you were in the PICU. You had been so critical just the week before that I simply cried because you were still here. Your nurses helped me get you into your wheelchair for birthday pictures, and gratitude filled me. 

Now this year, well, like I said, I just.  don't.  know.  how.

Love you so much, Aaron.

Miss you so much too. 

Love,
Mama

“Life is full of grief, to exactly the degree we allow ourselves to love other people.”

— Orson Scott Card

Processing

Dear Aaron,

There's so much in that word.

Processing...

I'm training in EMDR this weekend, the second half, and it's pretty intense. 

Most things related to your life bring smiles, and then tears because you're gone. (I still struggle to realize your smile and laughter won't ever be seen again in this world.) But most feelings are okay, even good.

However, there are some sights and sounds that can really set me off.

Most people would think that Lifeflight would be one, or maybe vent or pulse/ox alarms. Both your Lifeflights were okay for me. We got you into a good spot before leaving and they were smooth. And the stupid alarms, well, exposure to them was waaaay overdone. I mean, they were part of the background noise. Most ambulance rides were, too.

Most...

But there were some, a few, where we went lights and sirens. Those were the ones where I put off calling, or didn't realize earlier that you were in trouble. And since you passed, sirens have been very triggering. In the moment, I didn't have time to stop and think about it. I mean, I was bagging, we were pushing meds, we were working to keep you stable, or stable-ish. 

But more and more, sirens have been hard.

So today, because we have to practice in training, and we only have each other to practice on, I figured I'd take advantage and get some free therapy.

Oh, boy...

There were a lot of feelings that came up. It was hard work! 

But Aaron, it worked! I got to where the image of those lights rotating on the jersey barriers, the memory of the sirens, well, they're okay. 

I know you loved me, and love me, and trust me. And the paramedics and me and you, we made a good team. 

And I did what I could with the knowledge and skills and tools I had. 

And I am enough.

I am enough.

So are you.

But still, I miss you. I guess that's okay. 

'Cause I love you.

Love, 
Mama

"Live every moment, laugh every day ... love beyond words" 

Part of You is Still Here

Dear Aaron,

Six more days. Six more days until your birthday? Do you have a big party planned? Is Grandpa Bear there? Nana and Papa? My Grandma and Grandpa? You knew Grandpa Bear here, but not the rest, but somehow I can't imagine you and Papa not being super close. I mean, you share middle names, you're both amazing people, strong, courageous, and oh so full of love.

Oh baby, I miss you so much. 

Today the mail brought tears, both of pain and of love. 

Aunt Liz sent me a beautiful pot with spring bulbs just getting ready to bloom, along with her love especially over this next week.

And the Utah State Government sent a reminder that it's time to renew your handicap placard.  Somehow I don't think you need that anymore. The last ones currently sit in the closet upstairs, with all the rest of your things. 

I remember when I first went to get that. It seemed a little funny to me. I mean, what one month old is  capable of walking 200 yards (or whatever the requirement is)? And obviously that's not why you qualified; you needed oxygen to breathe. At the time though, you used these little cute tiny tanks. It wasn't a big deal, but I figured that way if I needed it, I'd have it for you. And if not, I just wouldn't use it.

Then not even three months later, you acquired a bunch more accessories: a trach and a vent to go along with your oxygen, the suction machine, a pulse/ox, your g-tube and feeding pump, and of course all the back-up emergency supplies as well. Then the wheelchair... 

Now, I carry you in my heart. I use your lunch bag each day for my own lunch at work. A crystal angel hangs from my rear view mirror, a butterfly on the back window, and all my little emotion stuffies sit below the dash, reminding me to lean in and feel all the feels. Many of the name tags from the PICU are on the inside of my closet door. Your hospital gown on the chair in my room; your bib that says "Hope" on my shelf. Gentle reminders of you. I try. Sometimes the pain is overwhelming. Sometimes I feel peace. Always there's a sense of something missing.

Your season paintings still hang in one office while a butterfly wind chime hangs in the other. I think,  it's fitting. I mean, afterall, you brought me to the field. You taught me to meet people where they are, to help them help themselves, to want to listen, lean in, and just be there. You taught me that even in the pain, joy can be found. Even when it's hard, I can take another breath. 

I'm sitting in the hammock in the backyard, thunder rumbles in the distance, and the hummingbirds zip in and out drinking from their feeder. I hear birds and feel the grass on my feet. I'm trying, Aaron, I really am. And I think most of the time, I do okay.

Sometimes I break down, and I suspect that may last until I hold you again in my arms. I keep talking to you in my mind, often while driving. The other day I woke up with dream fragments running through my head. They were fractured enough that I could not grasp them, but it felt happy, calm, peaceful. Were you there? Did you come say, "hi"? 

Miss you kiddo. Love you so, so much.

Love,
Mama

“I know you’re gone but… 

You’re still here, everywhere…”

– Debbie S.

Ten Days Until Your Birthday

Those we love don't go away
They walk beside us every day.
Unseen, unheard, but always near..
Still loved, sill missed, and very dear. 

Dear Aaron,

Ten more days, ten...

Facebook reminds me of old updates, blog posts, and I am grateful. 

But sometimes they make me long for my innocence.

In 2020, four years ago today, I wrote 10 until 10. It was ten days until you were ten years old. I had no idea what was on the horizon. You were healthy, happy, having a great time, learning, growing, teasing...  

It can be seen if you click on the blog title link above. There's even a fun video of the many funny faces you made.

You know, you were a lot like most almost ten year olds.

But most 14 year olds are not gone. Most celebrate with loud noises, friends, lots of sugar, maybe pizza, anyway lots of food 'cause you know, they're 14. 

But you're forever 13 1/2. 

And I find myself crying a whole lot more than I have for a long time. 

A friend sent me a sweet sign and I've put it in the corner garden, where I selected the flowers with you in mind.

Lavender because we would use lavender lotion on you. Pansies because they seem delicate and small but are actually pretty strong and they bring a touch of color and joy to their corner of their world.

Matthew and Kensey leave for Wisconsin tomorrow. Andrew moves out the beginning of August. Michael leaves on his mission the middle of August. And then it will just be me and Daddy. Daddy asked me what we were going to do when it was just us, and I told him that I have no idea...

"When one person is missing the whole world seems empty."

- Pat Schweibert 

I Heard You

Dear Aaron, 

I don't hear your alarms anymore. I mean, I did hear them in my sleep, or when something else would beep, for the first few weeks after you left. But it's been a long time since that happened.

Then last night, I heard you talking. Standing in the kitchen making pizza, I could hear your squeaks and vowel sounds, your almost giggles, your squeals. I paused as it caught my heart, and listened. 

Eventually I realized it was Barrett downstairs, but for those few minutes you were back, here, and my soul was comforted. 

And then it ached all over again. 

I'm still not sure how to go on without you. 

Sometimes it's fine.

Sometimes it's most definitely not.

I pause at your grave and talk to you, and listen for the whisper on the breeze. 

I find myself opening the windows of the car, catching the tweets of the birds. I wait for the whirr of the hummingbird wings on the patio, and the tones of the windchimes.

They all remind me that I am here, and that you were here, and that somewhere, you still are. 

And you will always be a part of me, and me a part of you. 

"There’s no end to my grief journey because there’s no end to my love for you."

- J.S. Golubich 

My "A" Team

Dear Aaron,

Tuesday was Andrew's birthday, your "A Team" sidekick. But true to form, Tuesday was a bit busy. 

Andrew did take the day off, but I didn't get home until after 7 again. I did stop and buy his favorite doughnuts from Walmart. I bought two boxes: one of his favorites and then one for the rest of us. He asked if he could have a second (or third?) from his box and I told him those were his, to do what he wants with him.

His exclamation of surprise reminded me of a little kid at Christmas. His grin was so reminiscent of yours.

He's an awesome young man, and he's been such a great brother for you. He would totally tease you and you would go right back at him. The last picture we have of him holding you in the hospital, so raw, so painful, so full of love was his Facebook profile pic for a long time. 

He is so proud of you.

We are so proud of both of you. 

I'm sure you're very proud of him.

So since Tuesday was kinda crazy, we'll celebrate him today, the other half of our A Team. 

He wears your initial around his neck daily. I suspect that most people think it's for him. It's not. It's for you.

Recently a mom asked how to tell her children that the baby she is carrying won't be here very long. I remember telling your older siblings about you. Each had a different reaction. Andrew was not quite seven at the time. His birthday was just over two weeks before yours. Somehow it didn't make sense in his little six-year-old brain. He would just go on with life, and then usually at least a couple times a week he would pause and look at me and ask, "Why can't babies like ours live very long?" And honestly, most of the time I would just reply, "I don't know." 

But he knew he loved you, he wanted another little brother, and to him, that's pretty much who you were. 

We took you to the Alpine Days parade that year and were hoping to find close parking, mostly to be able to escape if you struggled. It was so hot, and you were so tiny and fragile. So Daddy asked a policeman if there was handicapped parking somewhere, and from the back of the car, Andrew piped up, "Who is handicapped?" 

He didn't see you that way. You were just his brother. 

You have shaped us into the people we are today, much better than we were before.

We love you so much. Thank you for being part of our family.

Miss you.

Love,
Mama

"No individual can a win a game by himself."

- Pele