1000 Days...

Dear Aaron,

March 9th, 2013 I posted "1000 Days of Love."

I went through your first 1000 days, 100 days at a time, and made a video for you.

By 1000 days of life, we had settled into a routine. 

And I guess the same can be said for 1000 days of loss. 

I still miss you.

I always will. 

That will never change.

But I no longer listen for your alarms, or rush home as soon as my work day is over. I do still go by your grave every night. That too has become part of my routine. 

Last week, I found more bags of your ventilator water. Not many, but a few, forgotten in the drawer where I stashed them for easy access. They're now gone too. 

I have songs running through my mind: "(It's Gonna Be) Okay" by Piano Guys, and "The Hands of Time" from Brian's Song. The first was Michael's favorite, and my theme song for my life for so many years. I just couldn't listen to it after you left. I felt like it had all fallen through, the walls had come down, and I was all - tapped - out. But now... Well, maybe I'm learning to breathe again. I know you'd want me to. There are good things. And yeah, somehow, some way, it will be okay.

And then "The Hands of Time." I hadn't thought of that song in years but was reminded of it through someone's comment on Sunday night. I used to sing it while playing the piano, like all the time. It took just a brief reminder before I remembered it all.  

If the hands of time were hands that I could hold,
I'd keep them warm and in my hands,
They'd not turn cold.

Hand in hand we'd choose the moments that should last,
The lovely moments that should have no future and no past!
The summer from the top of a swing,
The comfort and the sound of a lullaby,
The innocence of leaves in the spring,
But most of the moments when love first touched me.

All the happy days would never learn to fly,
Until the hands of time would choose to wave good-bye!

And oh, I wish I could hold the hands of time, freeze time, hold you again, just one more time, see you swinging, laughing with your brothers, cuddling with Daddy. I miss the innocence of the day 1001 days ago, when I couldn't even imagine you not coming home.

But then I read back over some of my posts the last 22 months of your life, and maybe I did know... deep inside. I wondered how much longer you would hold on. But I couldn't imagine life without you. You had woven so tightly, so intricately, into the fabric of my life, my own breath.

It is said that 1000 days makes you a beginner, but it takes 10,000 days to make you an expert. By the time you are gone 10,000 days, I will be approaching my 82nd birthday. Maybe by then we'll be together again, or shortly after. 

Maybe....

In the meantime, I'll keep going, keep trying, keep loving you and the rest of the family.

And keep missing you.

Love you, kiddo. 

Love,
Mama

“One becomes a beginner after 1000 days of training.
One becomes a master after 10,000 days of practice.”

Mas Oyama 

September...

Dear Aaron,

It's September, again.

The world keeps turning around, and going around the sun. It seems like it should have stopped, but it didn't. 141 weeks. My brain still tracks the weeks without me even realizing. 

Michael is home and gone to school. Linnaea has started first grade. Andrew and Zoey blessed little Ryder. Did you guys hang out together? Did you tell him about the fun times you had with his dad? 

The sun sets before 8:00 now, and doesn't rise until 7:00, according to weather stations. Except that doesn't take into account that we live against mountains on the east. It's really more like 8 am. The weather is cooler and school has started. If you were here, you'd be a junior in high school. 

I went looking for some stickers today and while I still can't find them, I found a bunch of your things I just put in my closet. There's the white board that we kept track of recent changes on, your meds sheet that listed so many doses! Medications that helped your tattered heart and lungs and brain keep going. I had forgotten that you weren't digesting well at all. We had just changed your feedings to run 100 ml over an hour and a half, less food over a longer period of time. Years ago, you could take in a full feeding of about 250 or 300 ml in about ten minutes. 

I think in many ways, I couldn't see the forest for all the trees. Your body was shutting down, but I couldn't see it. I saw it in my mom. I've seen it in others. I knew (at least academically) what the signs were. And yet, I was so preoccupied with keeping your heart beating, your lungs breathing, that I missed it. When you left, I was in shock. I kept sitting there, holding your hand, waiting for it to move, for you to grimace, to cough, something...

But you didn't.

With Michael coming home, I won't be writing weekly emails anymore. For the better part of 13 1/2 years, I wrote emails to your siblings who were gone. I'm not sure what to do with that now. Do I send out a family one? Or do I just write to you? It's like a journal has been taken away.

Tomorrow I'm teaching Young Women's about the blessings of priesthood keys. And once again, I've procrastinated. I mean, it's definitely been on my mind, percolating so to speak. I keep thinking of all the priesthood blessings you received through the years, starting with before you were even born. I remember the stranger, a dad, in the ER. We had to wait outside the room for them to stabilize you before he could come in. I don't know his name, but I will be forever grateful to him. The young men in the hospital, your dad, your brothers who stepped in. And all the prayers offered on your behalf by so many. 

And I remember Michael, barely four, asking me if Heavenly Father heard his prayers for you. 

I miss you so much, Aaron. It's still strange how life keeps moving forward and sometimes it seems that having you here was just a dream. 

Stay close...

Love,
Mama

September comes, and... Summer thins away.

~Hal Borland 

Almost Done...

Dear Aaron,

I sit on the back patio with the breeze blowing and gray clouds like the underside of quilt batting. The monsoon rains have come, but this far away from the ocean means moisture is still hit or miss. When it hits, it does it hard, which is both good and bad. The drought is awful, and so are the fires. But the water hitting already burned ground creates flooding and more destruction too. Definitely a double edged sword. 

Summer is winding down. School starts next week. Linnaea will be in 1st grade; you would be a junior. If you were like your siblings, you would be caught up in extracurriculars, maybe soccer or football, or band or choir or ballroom. You'd be taking a bunch of really hard classes and learning to drive. If you were still here, we might have moved you over to the high school by now. In 2009 as we put together your IEP, your teacher and principal told me you really had outgrown your school. As I talked to some special ed teachers at the high school, they told me their own students were doing math similar to what you were doing in 4th grade. 

But you're not here; you're there. I was remembering again what Aunt Liz said I told her when you were born: "He's here." And when you left: "He's gone." Here and gone. And I miss you.

Your Michael comes home next week from his mission. Thirteen and a half years of missionaries, and it comes to a close.  You were there, physically, for each one of the others. And while there were smiles and tears through smiles for others, each one broke down in sobs as they hugged you. But you won't be there this time, at least not physically. Will you put your arms around him? Hold him? Let him know you are still there? 

The two of you were so close. He doesn't even remember what life was like before you were born. He wasn't quite four yet. He knew his numbers between 85 and 100 before he knew 1 through 20. He read the Book of Mormon to you, and played and goofed off with you. 

The days keep coming, the world continues on. And somehow, we move forward too, but not without the pain that comes from being stretched in ways I never wanted. 137 weeks, almost 1000 days. 

Today I pulled over for an ambulance and for the first time in a long time, fought back tears as it rushed by. I hope they get the help they need. I hope they are treated as well as you always were.

You were and are a blessing to so many...

Love,
Mama

"Stumbling over all those little moments of grief is just a part of moving forward."

~Terri Guillemets 

Aaron, I Cut My Hair

Dear Aaron,

I cut my hair last week.

The only people who knew ahead of time were Daddy and a coworker. 

It's short, for me it's really short. I think the last time I had it this short was the summer I was 12 or 13. But I like it.

My coworker said it took ten years off me. I quipped back that it was good, 'cause life keeps just adding. 

But then later, I wished it really could take ten years off. 

Ten years ago you were here. You were happy, (relatively) healthy. We had a couple stays in the hospital, but not really big deals. We were in the midst of birthday parties, parades, soccer tournaments, one brother coming home and another leaving, plays and trips to the water park. All my kids together for the first time in three years. I was switching your feedings from commercial formula to a blended formula which worked so well for you for a long time! 

It was busy, crazy, loud, and good.

You were here.

Now it's not as busy, pretty quiet, and even though you're not here, still pretty good. But I miss you.

Hummingbirds are back in force and I sit on the patio as they swoop and chirp and scold each other, guarding their territory, not aware that the food won't run out. 

I wonder if I'm a bit like that, or if I was. Although your time did run out. I still don't understand. My brain still really doesn't comprehend how you're not here with me anymore, although in some ways, I guess I've kinda learned. 

I don't hear your machines anymore, and I no longer have a hospital bag packed. I will turn off my phone. I don't even cry when I hear sirens anymore (although that only happened after you died, not before). 

I still miss you even if I don't cry every day.

I still think of you every day even if I don't write nearly as often.

It feels deeper, quieter, but more a part of the visceral portion of me. Not as visible, not something people look at me and see anymore. I've learned to say "nine" when people ask how many children I have. Usually they stop there. But recently, some have asked what the age range is, and that stops me a bit. Are you 13? Or 16? I don't have children at home, but you're too young to have left.

And yet you did.

Sending so much love heavenward.

Love,
Mama

“It’s an honor to be in grief. It’s an honor to feel that much, to have loved that much.” 

- Elizabeth Gilbert

Do You See Me? See Us?

Dear Aaron,

Somehow it's hitting harder.

Again.

I'm not sure why. I mean, the pain has been quieter, deeper, less obvious. 

But my birthday was last week, and I've been missing Gramma more. How am I supposed to do my birthday without the woman who gave me life, and the son I gave life to?

Yesterday I bought some things for Daddy's birthday and the woman at the register recognized me as "Aaron's Mom." I was so touched. What an honor to be your mom. Today I got out of the car at the cemetery for the first time in a long time and touched your picture, your stone. 

And wept. 

I don't cry every day anymore. Probably not even every week.

But my body and brain still remember how long it has been. 

133 weeks. 

Forever it seems.

I sit on the back patio and hear the chirp and twitter of the hummingbirds, the hum of the A/C, the slight rustle of the leaves in the trees, and the sounds of teens playing in the park across town. Peaceful. The soft clouds cover the sky and the last pinks of the sunset touch the undersides of them to the northwest, above the neighbor's playset. 

And I wonder if you see it, too. 

I remember several years ago declining a candy because it was offered to everyone who would have a birthday that year, and I struggled with the idea that someday I would have birthdays that you would not be here for. Someday, your birthdays on this earth would end, and somehow, inexplicably, mine would continue.

Your Michael comes home from his mission in six weeks. Andrew mentioned that it will be good to have a little brother again. He said with Michael gone, and you gone, he's felt like he didn't have any younger brothers, and that was weird. I hadn't thought of how this affected him, or Michael, at least not in those terms. 

Andrew and Zoey's little one will be coming any day now. Are you guys playing? Have you told him all about how much he is already loved? How you know this because you were so dearly loved?

I miss you!!

The waves are crashing again.

And I feel like I'm drowning.

Be close, please...

Love,
Mama

"... Oh, my love will fly to you each night on angel's wings..."

Dixie Chicks “Godspeed” 

Bringing You Home

Dear Aaron,

I woke this morning and the day felt different.

A bit melancholy, bittersweet, and even a little contemplative.

I didn't know why, and then I looked at the calendar.

Sixteen years ago today we got to bring you home.

Home.

Where I didn't know if you would ever be, and yet you were.

And for almost 13 1/2 years, I brought you home again and again and again. The last time was on November 23rd, just in time for your last Thanksgiving.

Now I have those memories of you, memories you were sent home to make.

You weren't supposed to live. 

At two weeks old, you were sent home to die. I knew that. But the goal was to make some of those memories here before it was too late so as soon as you were "sorta" stable, you came home to be with us.

And you were. 

Miraculously, wonderfully, and perfectly in your imperfections you did.  

Today as I left, I saw a small dove's feather on Deborah's car and smiled.

Your fingerprints are still here, still at the new hospital, still on our hearts. 

And they will be until we are Home with you.

Love you, kiddo.

Love,
Mama

“The connections we make in the course of a life--maybe that's what heaven is.”

- Fred Rogers 

Two and a Half Years

Dear Aaron,

It seems so strange that it has been so long...

And yet, like yesterday.

Forever since I held you, and only moments since I ran my fingers through your hair, kissed your button nose, and walked out of the room . . .  leaving you behind.

I feel disoriented, confused, bereft, and yet full of love and grateful for you.

Your clematis bloomed this week, except it wasn't what it was supposed to be. I "bought" a white one, for innocence, except this one is not white. It's purple. Not what I wanted. Not what I expected. Not what I planned.

And maybe that's fitting. You were very much wanted and loved, but when we learned about your extra piece of love, well, that was not expected or planned or hoped for. And yet, you were exactly what I needed. You taught me so much, and I suspect still teach me. You changed me fundamentally.

And as Dad said, if the clematis is supposed to represent mischievousness and you, well, maybe it makes sense that the long-awaited first bloom was anything but what I thought it would be.

Your big kids continue to move forward: new babies, new jobs, new friends, new challenges. I love watching them grow. I remember your zest for life, and your love for adventure. I mean, I guess you're on one now anyway. I just don't get to check in with you on what's happening. 

I keep on going. I try to make you proud. I hope you're happy; I really do. 

You are amazing, my son. You are the gift I never knew I needed.

I pray you know this.

I do wonder how many people still think of you. I mean, I know I do multiple times a day. One of these days I'll tell you the story of losing and finding my stone heart. It sits in my pocket again, where it has been every day since you left except while it was missing. The finding was a miracle that I can't explain, and happened two days before your birthday.

I needed that, and I didn't even realize how much. Your birthday passed quietly, with only three members of the family outside your dad and siblings even remembering. But three reached out, and so did a coworker that I didn't even remember telling. I think that touched me all the more because of those who forgot. 

Or maybe they thought it would hurt me too much for them to say something, which is funny 'cause I certainly remembered. 

I don't know...

Missing you always, but especially today.

Love,
Mama

"We never bury the dead, son. Not really. We take them with us. It's the price of living."

~ Henry Parrish