My Own Broken Heart

Someone sent this today. 
Oh, my smiley boy... 

Hey Aaron,

Today I was back at Primary's for the first time since leaving you there. I had a meeting at the Eccles building and it wasn't too bad. That's probably due to two things: you didn't usually go to those meetings, and your niece provided a nice distraction. (She was soooo good and charmed everyone.) It was good to see people, but also a little bittersweet because with the new campus opening, I won't be going to any of those meetings anymore. I'm having to change my day off to make it to the new hospital council meetings. So that went okay although next week I'm supposed to present at the department heads meeting in the main building. That may be a bit harder. 

After, we went to American Fork Hospital to see your new nephew. He really is the cutest. Did you guys play together before he came? Did you bring him to his mom? Does he know you? I really hope so. 

And then we left, and there was your school. It's right across the street from the hospital. Linnaea asked if we could go there and see you. Oh baby... 

I wish so badly that we could. I had to tell her that you aren't there; you're in heaven. 

"Why?"

Because your heart was worn out and it just stopped, and now you're with Jesus.  And my heart broke (again). 

I often wonder how it can go on breaking over and over . . . but somehow it does. 

It's a little easier when I stay busy, and today was really busy. But then at night, it gets quiet and I let myself think of you. I remember your laughs and your smiles, and your goofy sense of humor. I miss drawing up your meds and getting your food. I miss you playing with your toys, and tucking you in at night. I miss getting up and taking the noisy toys away that you found in the dark and woke me with. 

I still wake up at night, multiple times. It's quiet and dark and I no longer sleep in my office. 

Mornings are hard, too. For so long I had to be up and running at 6 to get your treatments done, to give the meds that had to be done on an empty stomach before your first feeding.  I'd get those done and start your shake vest.  Once you were set, I'd finally start getting ready myself but it didn't take that long because I'd shower at night when there was someone to listen for you. 

Now, I can shower whenever I want, and when I do I often cry. And I have a hard time getting out of bed in the first place. It all seems pointless. 

I do it anyway because even though you're gone, life still goes on here, on this side of heaven.  I have to go to work. The dogs need taking care of. Michael and Dad and Jonny, Avanlee and Elend are all here. So in spite of a repeatedly breaking heart, I keep going, keep trying, even through the heartache of missing you. 

Love you, my little man. Send me kisses on the breeze... 

“The reality is that you will grieve forever. 

You will not ‘get over’ the loss of a loved one; you will learn to live with it. 

You will heal and you will rebuild yourself around the loss you have suffered.” 

- Elisabeth Kubler-Ross

Your Hand in Mine

I miss you, Aaron.

I mean, I guess that's not new. 

I came home from work today and glanced in your room. My body is learning I don't really need to go in there, but I looked anyway. And tonight it looked like you might be there. It was dark, except the Christmas lights that are above your bed. Oh my baby...

Tonight Linnaea is having a sleepover with me because her Mom and Dad are at the hospital where baby brother is being born. And honestly, it probably couldn't have happened if you were still here, but still... 

She does help fill the emptiness, as does Elend. I'm so grateful to have them and all your brothers and sisters. It's not quite as quiet as it would otherwise be. 

Today Ashley brought by your hand molds. I can almost feel your hand still in mine. I held your hand so many times over the years: at birth, when playing, trying to do your g-tube cares (you monkey, you always tried to "help"). I held your hand over and over and over again in the hospital while they put IVs in (so many IVs), drew labs, did echos, waited for surgery and then in post-op. I held your hand during procedures that they don't usually let parents in for.  And for hours after you passed. Your hand in mine one last time at the mortuary. These are a gift I will treasure forever. 

You know, if you measure time by days, I think I might be doing okay. Most of the time, I'm all right. I go to work. I can talk about you, sometimes even smile or laugh. But I still break down at least once a day, sometimes more. It's a physical ache, like someone is squeezing my heart, or my lungs don't want to breathe, but somehow, they keep on going. How do they do that when yours do not?

I read your death note and your discharge summary. I wondered if I missed something, and I felt like I should know all of it. I might have missed some of the tiny details, but no, it happened the way I remember.  You held on as long as you could, and then gently slipped away.  And frankly, I guess it really doesn't matter. You're still gone. 

“I will remember the feel of his hand around mine for the rest of my life.” 

— Meg Leder

More Snow

There's snow today, so much snow. In fact, in the first two weeks of January, we've made up for not getting the snow that usually falls in December and January both. Lots of snow.

As we were trying to shovel it out this morning (because of course the snow blower broke), I was thinking about you.

But I guess that's nothing new. I don't know that you're ever very far from my mind.

But I was thinking about how diligent your brothers have been, especially Michael, in getting the driveway and walks cleared quickly so you could get down to your bus. And get back up from your bus. And we would try to clear the big chunks at the end of the driveway where your bus would stop. 

And we would also clear the straight walk across the front of the garage so if we had to call for help, paramedics could park in the driveway and not have to navigate steps with the gurney.

It was kinda like an insurance for me. If we cleared it, it would be fine. If not, we would be in trouble. In fact, I think I remember that your last trip north, we had snow on the ground and hadn't gotten it cleared, so the paramedics also helped clear the steps before taking you out. 

Maybe we should have done it and you wouldn't have had to go? I know that's not really how it works. It was your time. You were so tired. You fought so hard for so long. But still....

Does it snow in heaven? 

Do you get to play in it?

Making snowballs and building snowmen and igloos? 

Or are there flowers blooming and butterflies around? 

It seems so strange to go to church with Daddy and Michael, and without you. I don't think I've done that in over 13 years. Often we all went together when it was safe. But during most winters, Daddy and I would take turns staying home with you. There's so much more room on the pew now, too much I think. Do you come sit with us? Are you there? Or are you busy doing other things that need to be done?

I miss you, Aaron. Miss you so much...  

If I had a flower for every time I thought of you, I could walk in my garden forever.

Alfred Lord Tennyson 

Three Weeks

Three weeks.

How has it been three weeks?

Last night I went to dinner with some of my cohort. I needed those ladies! I mean, the food was really good (and I ate waaaay too much), but that paled in comparison to the connection.  We laughed and talked. And they listened as I spoke of you, of what it was like, of what it is like. They were just there, so present, so with me. 

And my soul needed that connection desperately. 

Recently someone asked me about New Year's resolutions. In the best of times I struggle with those, so I admitted to not really having set any.  "So just to have a happy and fun year?" 

Um, no. Frankly, my hope is to get to the point where breathing doesn't hurt. 

I wanted to scream, "I just buried my baby, my baby! Why haven't things come to a screeching halt??

And yet, I know they don't, they can't. 

But you still live, not only on the other side of death, but in the lives of those you impact, even the ones who have never known you, or known of you.

Facebook reminded me about the time a few years ago when Joseph got the flu.  There was a struggle to get the antivirals*. One of the obstacles is that you had needed Tamiflu the year before, 50 weeks before to be specific. But insurance only allowed it once a year. In talking with insurance, the pharmacist in charge no only overrode the limit for you, but also revisited the guidelines and changed them to every six months right then. So other people who needed it earlier have also been able to get the help. And you did that. You. My son. The little boy who never took a step, never spoke a word with his own mouth, who needed care for even the very basic of life's essentials. 

You help save lives. 

Oh, my little boy. I miss you, I miss you desperately. My goal for this year is to get to the point where it doesn't feel like my own heart is going to stop. 

I miss you. 

"Come back. Even as a shadow, even as a dream."

Euripides

*Here's the post from 7 years ago:

Part of last night's frustration was that the on call doc didn't feel like the family needed Tamiflu. "The CDC actually recommends against it's use prophylactically because it's just not effective." And had to be talked into prescribing it for Aaron. (His poor nurse who was the go between.) Silly man obviously hasn't worked much with special needs moms. We don't just take a doctor's word for something, we look it up.

The CDC actually does recommend against widespread or routine use because it could lead to resistance to antivirals, or a shortage of antivirals for those who might need it. BUT it is recommended for people at high risk for developing severe complications (Aaron??) and for those in close contact with them with a known exposure.

And yeah, my doc was calling it in within minutes of getting to the office this morning.

Then the other part was that Aaron had the flu, and was on Tamiflu last February, 50 weeks ago. His insurance will only allow it once every year. It hasn't been a year. I called this morning, and not only did they approve it, the tech who took the call thanked me for bringing that to their attention and the pharmacist in charge was at that moment revising the guidelines for once every six months. So she said that Aaron helped out a lot of others, too, who might not have made the phone call. Yeah, don't mess with us special needs moms. We DO do better research than the FBI.

Trust the Process

Tonight was Michael's senior night for wrestling. 

Unfortunately, he's currently injured so he wasn't able to wrestle, but Coach refers to him as his right-hand man at the score table. Do you remember going to wrestling matches? I know you made it to a couple. Were you watching tonight? It was kinda rough for our boys. We were up against PG, one of the major powerhouses. 

Each of the seniors was asked to give advice to the younger guys. Michael's really stood out to me. 

"Trust the process, stick with it, and you'll see results."

Trust...

I'm trying to.

For some reason, this evening your last few minutes have been playing on repeat, over and over in my mind.

It still seems surreal. Will it always? I don't know.

But I keep looking at the monitor and realizing that your heart rate is dropping. I honestly don't know what any of the other numbers were. But in all the times that your sats would drop, or you would struggle to breathe, or your temperature be out of whack, your heart rate never dropped.  Even with sats in the 40's, it would stay high and steady. 

Not this time. As it hit 50 I realized you were going; you would not be coming back.

And then it just continued to slowly go down. It was like a countdown; almost every single number, a pause for a second or two at most, and then lower still. 

Oh baby...

And now I'm left to try to trust the process.

Trust that if I will lean into my pain, that somehow I'll come through okay. I'll find a way to go on without you. I get up each morning, talk to people, go to work and still volunteer with the hospital. Although, honestly, I'm finding myself pulling back a little on that one, at least right now. I'm trying. I really am. And I think most of the time I do okay.

But oh, the nights are still so hard, and I'm wondering if they always will be.

I watched those wrestlers out there tonight. Wrestling is HARD! Those six minutes are intense, all demanding, and the guys will tell you it's the hardest six minutes of your life. But they kept going. Not one of our guys gave up, even when they were down. 

And this is the hardest thing I have ever done, and I hope the hardest thing I ever have to do. Up until December 23rd, the worst time, most painful time of my life was the 16 days you were in the NICU. I had just given birth. You were not healthy. And I could only go see you a few hours a day, leaving you in the care of others. But that time in comparison? Yeah, it was a picnic, a walk in the park with rainbows and butterflies. Okay, maybe not that good. But I saw you and held you and loved on you every day.  I still love you, and I always will, but I no longer get to be with you. 

One Sunday, I think it was Father's Day 2010 when we got ready to leave the hospital, Michael (not quite 4 yet) threw a fit. He did NOT want to leave you there. And if we had to leave, you needed to come with us. Oh, Aaron, he was only expressing out loud what my heart was saying. 

And now I have to leave you in that cold cemetery where the wind and snow are blowing. 

But I will trust the process. I will trust that God will bring me through. He can help me. He understands. And He knows my pain. 

Love you, little man. Stay close, please. 

The last breath is as sacred as the first. ~Terri Guillemets

Time Moves On...

Hey kiddo...

It's been a month and a day since you were home, here, with us in Alpine. 

And a month since your last admit.

I woke up on the 9th and your heart rate was pretty high (139), but still, you were happy and playing and attentive. Daddy read "Harry Potter" and you loved listening to him. He'd share the pictures and all the Easter eggs in the illustrated books. 

By that night, you were struggling to maintain your sats so I gave up and called 911. You were admitted into the PICU about 5:00 the morning of December 10th, and I thought I knew how things would go. I even thought we'd be home in less than a week, maybe about 10 days before Christmas.

I guess you were Home for Christmas. And so was I. But we were not together, at least not physically. 

How has it been so long?

How has it not been so much longer?

Time is weird. I'm told that time doesn't exist where you are. Does that mean that when I get there, it will feel like we haven't been apart? There's so much I just don't know.

But I know I love you. You made me a much better me. 

It still seems so strange to have you gone, and my head can't wrap around the idea of you never being here again.

I'm sitting here listening to some music a sweet friend shared, missing you, knowing you're okay, but struggling still myself. 

I mean, most of the time I do okay. I go to work. I interact with others. I can even make phone calls about you without breaking down (most of the time). But by evening, I think I'm tired of being strong, and evening was when you and I had the most interaction as I would get meds ready and get you prepped for treatments and bed and such. It's when you would laugh at me and play with your toys. And nights seem so dark, especially this time of year. 

Love you, little man. Miss you... 

"Death ends a life, not a relationship."

— Mitch Albom

Today...

Today I had meetings for the new hospital.

The one I helped design.

The one you signed your name on the support beam for.

The one you will never visit.

But oh, my son, you live on through the lives that will be touched because of you.

I reached out to a mama today because someone told her that Ventavis (iloprost) was not sustainable at home, and I wanted her to know that YES, it was! It's a pain in the butt to get the machine it needs, but it kept you alive, and happy, and (mostly) well for over seven years. 

She reached back and asked if you had passed early in the morning of the 23rd in the PICU. 

She had been next door and woke with the sense that something was wrong, and heard crying. And of course, the room was empty in the morning. I've been in her shoes many times and prayed for families and never been able to connect with them. But she reached out and I'm so grateful. 

Here's the thing, that's a Facebook group I almost never see, and I comment even less often. But I needed that connection and it was made. I find the hand of God is present in my life and it is what makes it possible to go on. 

When I got home from my meetings, I took some things over to your school, including the pens I had made for your teacher and therapists. I was pretty proud of them, and now I'm even more grateful I did it. So I took those over and also some clothes that I don't really have any emotional connection to. It was good to see people. Your principal talked to me about the memorial plaque they're thinking about putting together for all the students who have passed. In your school, there are a LOT. It's just the nature of the community. 

And it was all good. Until I left.

And then it wasn't. 

As I walked out, I started sobbing. 

I went up to the cemetery where I brushed snow off your flowers and stood some back up. I'm not sure why. I mean, we're going to get hit with multiple storms over the next few days. But it felt good to do it, although it was hard to see through the tears. 

I straightened up your bed tonight, although I still haven't washed the sheets. The Christmas lights (that have been up since last year) still come on each night and slowly change back and forth. The shirt you wore after you passed, the one I grabbed on our way out the door because you'd need something to wear when you came home, is on your bed, as is the sign I put in your wheelchair at your funeral. "He Lives, and I shall conquer death." 

I know you will. I know I'll see you again, actually see you, not just the you in my dreams or in pictures.

But oh, right now that seems so very, very far away.

I miss you, my little boy. 

"They say time heals all wounds, but that presumes the source of the grief is finite."       Cassandra Clare