Love You Forever...

Hi Aaron, it's me again.

I went by the cemetery on the way home from work tonight. It was so dark, which I guess makes sense. But I find I still have a hard time coming home from work knowing you're not going to be here. 

You were always my first stop on my way in. I'd come in, drop my backpack, and head in to check on you. Sometimes you were awake and playing, other times you were asleep. But you were always, always here.

And then there were the times you were in the hospital. Honestly, about half the time I was working, you were in the hospital, so there were a LOT of times I didn't even come home after work. I headed straight back to Primary's. So there's that pull as well.

Would you believe I went to check on you last night? It's been a long time since I did that, but somehow, yesterday as I went past your room, I veered in again. 

And you weren't there.

You won't be there ever again.

Your funeral was a month ago yesterday. 

Most of the time I'm okay, really I am. But nights are hard and may always be. But right now I'm trying not to think about how it's already been a month, and yet only a month, and there will be many, many, many more before I see you again. 

I was thinking today about the book, "Love you, Forever" and how the mama always says, "I'll love you forever, I'll like you for always. As long as I'm living, my baby you'll be." For a long time I thought that was odd and when I'd read it to your siblings, I'd change it to "forever and ever my baby you'll be."

But then I learned about the story behind it. He and his wife had lost two babies, and this was a book for them. The mama imagines them growing up, and as long as she's living, they'll be her babies, because love never dies. And that's what I finally understood.

Miss you.

Love you.

My forever boy...

I'll love you forever,
I'll like you for always,
As long as I'm living,
My baby you'll be.

    Robert Munsch

Frustrating Experience

Tonight has been frustrating.

Your new Tobii is going to a man who was severely injured many years ago while serving the Lord. His talker is old, outdated, and he's needing something better. 

But I'm trying to reset things so he has what he needs, and not what we've put on there. 

An IT person I am not! 

But I think I finally figured it out. 

Bleh!

You are blessing soooo many lives, my son. And maybe the frustration is keeping me from crying, maybe... 

It's hard, so hard.

Moving forward without you is still something I don't think I understand very well. Last night Daddy asked if using your earthly belongings to bless others brought me joy. I don't think so, not yet. It does help comfort me though.

Last night I sat at the piano for the first time in ages, probably years. (And you could tell listening that it had been that long.)  I sang the songs I sang to you in the hospital: "Edelweiss" and "The Sound of Music" among others. It felt okay. Not quite good, but okay. And tonight I sang in the car. It was a melancholic folk song, but still, I sang. I think I'll keep trying to use music to help me along.

Love you, kiddo, love you so much. 

Miss you too. 

“To live in the hearts we leave behind is not to die.” 

— Thomas Campbell

Letting You Go...

Hey, Aaron...

Your wheelchairs are gone. The gait trainer is gone. More and more "things" are going away. 

Today as I dropped things off at your school, I caught myself, almost on the verge of breaking down but I was also headed to work, so not good timing. 

And then the thought:

You're not losing him, you're letting him go.

Letting you go.

It still hurts, I won't lie. Frankly, I can't lie. This pain won't be denied. It hurts, it tears at me. 

But you were so ready. You stayed as long as possible. I can't hold you back. You left. Your mission here finished, the one on the other side still ahead.  

I need to not be holding you back. I still miss you. I always will. And it rips at my soul. 

But you, my beautiful boy, you are amazing, and I want to honor your life, your memory. I want to give to others and help others. That's what you were all about. 

You helped so many, many people. Your legacy lives on and will help countless others. You helped neighbors, church members, friends near and far. You healed our family, and you healed me. 

I can see you in this video, racing towards the ones who have already gone ahead: your grandpa, great grandparents, all your friends who've watched out for you from the other side. 

Grief is weird. I fully expect that I'll be swamped by a hurricane again, probably over and over. But for the moment, I'm at peace. 

I know you are, too. 

In the quiet misty morning

When the moon has gone to bed

When the sparrows stop their singing

And the sky is clear and red

When the summer's ceased its gleaming

When the corn is past its prime

When adventure's lost its meaning

I'll be homeward bound in time

Bind me not to the pasture

Chain me not to the plow

Set me free to find my calling

And I'll return to you somehow

If you find it's me you're missing

If you're hoping I'll return

To your thoughts I'll soon be list'ning

In the road I'll stop and turn

Then the wind will set me racing

As my journey nears its end

And the path I'll be retracing

As I'm homeward bound again

Bind me not to the pasture

Chain me not to the plow

Set me free to find my calling

And I'll return to you somehow

Bind me not to the pasture

Chain me not to the plow

Set me free to find my calling

And I'll return to you somehow

In the quiet misty morning

When the moon has gone to bed

When the sparrows stop their singing

And the sky is clear and red

When the summer's ceased its gleaming

When the corn is past its prime

When adventure's lost its meaning

I'll be homeward bound in time

I'm Not The Same Me I Was Before

It's Sunday, and my goal for church was just to make it through.  I did.

But I think I might have done a little more than that, too. There was hope and guidance, and only a couple of times when I teared up. 

I'm trying, kiddo, I really am. I still miss you dreadfully, but it also feels kinda selfish. 

You were done, so done. You worked so hard to stay, to be here, I think in part because of me. And now you're gone anyway.

So I can sit here in my grief, or I can try to channel it to help others. Frankly, for a while, it will probably be some of both. 

I've learned I do need to lean into the pain when I feel it, not stuff it, not deny it, and oh my baby, it still hurts so bad. I cry every day still, sometimes quiet tears and sometimes sobs that wrack my body and leave me yelling in pain. My heart and lungs hurt, my arms ache to hold you. I see other angel moms and they seem to get to the point where they can be at peace, and I am hopeful that someday I will, too. 

So I'm getting to where I need to choose to help others. 

And I need to go to the Source for relief. Someone said today that Christ is the Master of relief, and I believe He is. But I also know He knows my pain and hurts with and for me. The first thing He did when approaching Mary and Martha was weep with them. That tiny verse, the smallest in the Bible, "Jesus wept" holds so much love and insight into grief.  He stopped and mourned. He didn't say, "hey, just hold on, let Me take care of things. You'll have your brother back if you just give me a minute." He acknowledged them and their feelings and didn't dismiss them. He loved them and hurt for their hurt.

So I know He knows. He knows all of it. How my heart broke that night, how it still breaks. And He knows how to hold me and strengthen me, and He will be there for me through it all. 

And I trust that He will bring me through and help me find my way. I won't be the same "me." I'm not the same me I was, and maybe that's okay. In fact, I know it is. Frankly, I don't even remember the me I was before you were born. But I'm not sure who I am now, either.

I was realizing this morning that my life has completely and fundamentally changed from the way it's been for more than 32 years.  Thirty-two years ago, Deborah was born, then Mary and David, and the rest. I used to joke that if I ever got out of diapers, we'd never have another kid. Well, it took until the 23rd of last month to get out of diapers, and it was a sudden, unexpected and very unwelcome change. 

But more than the diapers, I've been responsible for a child who needed care for 32 years. Michael was not yet four when you were born; much too young to be left to his own devices (although sometimes he seemed to think he was).  I have had primary responsibility for a child (or multiple children) for that whole time, and now, I'm really not.

Michael may still be technically a minor, and your other siblings will tell you they need me, but honestly, they're all pretty self-sufficient. And Michael will leave home this summer, so I really won't have anyone I'm "responsible" for, not really. 

I know they say the job of a parent is to work yourself out of a job, but I think most of us can see it coming from a long ways away. 

I didn't.

And it's hard. 

I miss you. And I miss me, too. 

There are tragedies in life that change us forever,
the person we once were mistakenly listed among the survivors.

~ Robert Brault 

Time Keeps Moving On

Hey Aaron,

I did get some things done today, not everything, but some.

I got your stuffed animals out. You've got a LOT! I'm going through and separating some, the ones that are really, really important, and putting the rest in your bed for now.

I cleaned out the minivan, but I haven't actually cleaned it yet. I even sewed up the rips in the sides of the seats that I meant to sew back when we got it ten years ago. It's been ten years next month. I just got the reminder that we need to renew registration, but it might not be here that long. It's time for someone else to have some freedom, I guess. It will be another tender point when that goes.

And your manual wheelchair and gait trainer are already loaded up to go to your school on Monday. Sigh...

Someone asked me today what I usually do on Saturdays, and it totally caught me off guard! I mean, I don't know... For so many years it was soccer or baseball, or the rush of the holidays in between those seasons. And when you were here, it was getting meds and things prepped for the next week and making sure you were taken care of. Right now, I'm still trying to go through things. But... I just don't know. (Maybe the house will actually get cleaned one of these days, and maybe not.)

We placed your temporary marker today. Daddy and I went and I cleaned up your grave. We put down the beautiful granite stone, and oh, it just made it seem more permanent.

Does that sound strange? I mean, it's not like there's anything we could do to undo things. There isn't much more permanent, at least until the resurrection, than death. If there was something that could have been done, you know I would have already been on it!!

When I think of that morning five weeks ago, I ache. And in many ways, I want to go back, go back and hold your hand again, tell you over and over how much I love you, and how grateful I am to have been able to be your mom. And just be there with you, because it still doesn't seem possible that you're gone. And I can't see you anymore.

I miss you so much. 

Five weeks since your heart stopped, four weeks since I last kissed your face...

I haven't dreamed about you in so long.

Are you busy? Are you happy? Do you miss me, too? Or is time not really a thing in heaven? 

Sweet boy, I love you so much. 

It’s hard to process all of my “firsts” without you when I’m still gutted by our “lasts.” 
I couldn’t fathom you not being here,
 and I always believed that we had more time.”

– Michelle Leroux

Your Hands and Feet

Okay, Aaron, here goes...

I've got plans for tomorrow.

We'll see if they happen.

Your car needs to be cleaned out and cleaned, and gotten ready to serve someone else. 

I need (I really do feel the need) to clean out some of the things in your room, and I think I'm getting ready to take your bed down. I mean, if it was in a bedroom, that would be different. But your bedroom for the past 13+ years is also the front room. And it's time, maybe...

I guess we'll see what I can do. And if I can't, I'm not going to force it. I'm learning that growth can't be pushed, not without ramifications. So maybe it's enough to think about it, and maybe I'll get it done. 

This is hard!! I find I want to tell everyone, "don't you know? Can't you feel it? There's a light that's gone out of the world, and it sometimes seems so, so dark." 

Isn't this just a really bad dream? Can't it be? How is it that you're really gone?? 

I was looking at your hand and foot molds from birth, and from a month ago. They're different, and yet, still so similar. Your tiny hands and feet are (were?) much larger, but you still had the funny quirks in your toes, and your hands still naturally curved in with your fingers almost overlapping.

Do you remember how we worked on your hands when you were tiny? They were so tight! If you held our finger, it would hurt. But I would pump while you were being fed with the feeding tube, and I would massage your hands. You learned that hand massage and full tummy went together, which we carried through your whole life. Hand massage would help you know you were safe, loved, cared for. 

And those last few minutes of your life, and the next several hours of mine, I held and stroked your hand. 

I miss your touch, my son. It wasn't just you that was comforted; it was me, too. And now it's gone. 

Honestly, I really do okay most of the time. That you're missing is always an undertone to just about everything, but it's a quiet background hum, sometimes almost not noticeable. But night comes. It gets dark, and this time that we shared over and over through the years has been fundamentally changed. 

Oh, my baby.... I hurt.

“It isn’t in my past. It’s in my everyday.” 

– Helen Wilson

Rough Day

Hey Aaron, it's me again.

Today has been a bit rough. I didn't want to go to work, and I didn't really want to work once I got there, although it was okay once I started seeing people. 

Then I didn't want to come home. 

I guess I just didn't want to do or be or something...

No, I'm not needing an intervention; I just kinda feel numb. At least when I'm not angry. 

And you know, part of me is angry today.  

Somewhere recently I heard that 47 children in the US have died from influenza. Given the number of children, that's not very many. Except if one of those 47 is yours, in which case it's immeasurable, agonizing, and completely overwhelming.

Plus there's misinformation. I have no idea where all the news outlets are getting their information, but they're WRONG!! 

Articles put out a couple weeks ago talk about five people, two of them children under 18 having died in the past 30 days in Salt Lake County and none had been vaccinated.  I understand the need for vaccines, trust me, I do! And I understand it well enough that you absolutely DID get your vaccine! And yes, you still died. I have no idea if the others did or not, but I know my child DID! 

And that makes me angry!! Where does their information come from? Is it county specific? 'Cause you know, I somehow didn't realize that my child needed to make sure to get his vaccine in the county where he planned to die! Frankly, I didn't plan for him to die at all!! 

Oh, Aaron, my plan was for you to get better and come home. And you did get better, and you did go Home, but not the way I planned. I know that plan was better for you. I do. But my heart still hurts. My arms literally ache to hold you. And my memories overflow and stream down my face. 

Back when I was pregnant with you, before I knew that you were coming with something extra, I read The Book Thief. Narrated by Death, he refers to those he leaves behind as "leftovers." 

And now I'm a leftover with my own tattered heart.

“It’s the leftover humans. The survivors. . . .  I witness the ones who are left behind, crumbling among the jigsaw puzzle of realization, despair, and surprises. 
They have punctured hearts. They have beaten lungs.

Markus Zusak

"Your" Hospital

Aaron, this feels very surreal.

I’m sitting in your hospital and you’re not here, but maybe you are?

That’s how I’ve always thought of it, “your hospital”. I was so excited to help design it, so thrilled that it was so close to home. It would mean that family and friends would find it so easy to come see you when you were in here.

And you’re not.

But it’s beautiful! 

The ribbon cutting is next Friday and right now they’re putting finishing touches on everything. It smells new. It’s perfectly clean and bright and so close to being ready to help children. 

Beginning with design in 2018, those long days every month meeting up in Salt Lake… To holding our monthly meetings for the new exec team at American Fork Hospital… To presenting your story to the leadership team in the South Bay area of Provo. You even met with your ENT last May in American Fork where they were renting space in preparation to seeing patients down here in clinic. 

All these steps to opening.

I never dreamed you wouldn’t be here for this. 

But maybe that’s better for me. 

While I imagined you here, I never actually saw you here. Yesterday at the main hospital, I was looking for people I knew, seeing the places we went together, the elevators we rode as we’d discharge, the hallways we traversed to and from various imaging studies. There’s none of that here. 

But it still feels like Primary’s, your “vacation home.”

It is so amazing, and the number of children and families this place will bless is immense. 

And you are a part of it, even if you’re not still here. 

“What is lovely never dies, but passes into other loveliness.”

— Thomas Bailey

You Live On

I was asked to present a parent perspective on the Family 2 Family Mentoring program back in November.  However, the schedule ended up too full and they asked if we could come in January instead. Sure, why not? I so did not anticipate what would happen in December. 

Because of your life, I understand how important connection to other families is. Because I share our story, the caregivers can know as well. 

That said, today was good. It was a bit bittersweet. It's been one month since you passed. And it's also not likely that I will find myself at that campus again because of work and other responsibilities with the new campus. As I left, I picked up your temporary marker that a friend made for us. She had arranged for a neighbor to bring it to security so I could bring it home for you. It's beautiful, and as Aunt Kathy said, "There's a lot of life between those two dates."

Another friend told me she could see your fingerprints all over the new hospital. I'd forgotten that I'd advocated for medical gasses in the clinic setting. We don't have that at the main campus and that meant anytime you had a long appointment, I had to be careful to bring extra O2. The hospital rooms are mirrors of each other instead of same-handed (where all the heads of the beds face the same direction). Again, a few of us worked to point out that pediatric patients don't always stay facing the "right" way in bed. And I'm sure there are other things that I just don't remember.

***********

Here is what I said today to all the department heads at Primary's, and a special thank you to Jennifer for being there for me all those years ago.

This program is why I joined the Family Advisory Council because we needed this desperately. I was fortunate in my son's care to have actually had a fairly large social network of other parents who'd dealt with similar things. 

But eight years into it, in April of 2018, Aaron started having seizures. We did trachs. We did g-tubes. I did inhaled iloprost that’s never done outside the hospital at home. I did all of those things and I didn't even blink. Frankly, his older brother who is 3 years older did all of those things, no problem. 

Seizures scared me to death. I was terrified. Looking back, I probably shouldn't have been. They didn't affect his vitals a whole lot. But I knew of other kids who passed from seizures and things like that, and I, I was clueless. I had no idea. And so we end up in the ED. We’d seen neurology, but in the time it took to get the meds approved and what all, they increased. So we ended up in the ED and I have no idea how to make this work. Jennifer's upstairs, we've connected through Rainbow Kids team. She's upstairs with sweet Savannah at the time and she texts me. 

“Do you want me to come down?” 

“Yes! Yes, please come down.”  

I had ER docs, we had neurology, we had nurses, we had RTs because we’re on a vent. We had everybody. And they're like, “well, you're just going to give this med then, and you're just going to do this, and if this happens, you're going to do that.” 

And I'm like, “Are you freaking kidding me? I can’t do this! I can’t make this happen.” 

Jennifer comes down and says, “Girl, this is what you're going to do. And you're going to carry an extra dose of med because you know you might get home late and you don't want to skip it. And you're gonna do this and this is how you’re gonna make it happen and this is what you're watching for.”

I start thinking, “Oh my gosh, she and Savannah do this all the time. I can do this. I can do this. Okay.” 

Now, every one of you out here has had a mentor. Most of you, if not all of you, I think can say have been a mentor. But when we get that new diagnosis, we don't have a mentor. 

I remember talking with a young PICU nurse. She was a PICU nurse here. She does trachs and vents all the time, and at that point in time she was looking at her child possibly needing a trach and she's says, “I don't have an RT in my house and I don't have an attending around the corner and I don't have a fellow and how do you do this?” 

And I replied, “That's OK. Because if you get to the point where you need a trach, you're going to take some hours away from the hospital and you’re going to come hang with me. And we’re just going to do it. And it's doable, and it’s livable, and it's enjoyable.” 

Those of you who knew Aaron knew that that's what he was about. He loved his life. People sometimes say he was restrained by a trach and a vent, well, you know what? I'm sorry. I don't know who in the world gives a child a toy you can't take away when they’re misbehaving. But we did because he thought that's what it was. And he would play with it. And he loved his life. But in large part it was because I had parents who’d been there before me.  As much as we love the staff and all the help we got at Primary’s, it was the parents of children like that who taught us how to enjoy life, not to endure it, but to thrive. 

That’s why this program is so necessary. We need to be able to reach out because they're going to leave the hospital. The idea is not to live here forever. And they're going to go to school. Aaron was in 8th grade when he passed. He was an eighth grader. He loved math. He loved science. He hated writing. You know, kind of like most 8th grade boys. 

That's what we want for all of these children. We want them to enjoy their life and to live it to the fullest. And that, that's why I found the quote from Oprah and I reached out to Jennifer, and said, “Can I use a picture of you and Savannah?” Because she was my mentor, she made it so that we could do it, and you know, actually were able to do it without even blinking pretty quick. 

Sweet boy, I could almost feel you there with me today. You made this possible. Even though you will never go through the doors of the new hospital, you're still there.  And at the main campus, too. You live on in the lives of many children who will never know you, and yet will benefit because you lived. If that's not living forever, I don't know what is. You signed your name to the main support beam, and you are providing support in ways that a typical child would not be able to. 

My brave hero, you're amazing. Thank you for letting me be your mom. (I still miss you.)

"There are some who bring a light so great to the world
that even after they have gone, the light remains."

Unknown

One Month...

Tonight marks one month since I last told you goodnight.

And just after midnight will be one month since your last heartbeat. 

It is still so surreal... 

Somehow I'm carried through the day. I (think) I'm functioning and even doing okay. 

And sometimes nights aren't horrific, sometimes...

But last night I realized I'm almost out of time to pull video off the ring camera so I was going through those. 

I watched you playing, Daddy reading to you, you getting ready for school and coming home, and me taking you to your last appointment at the hospital. 

And I watched you going out the door with the paramedics. 

You never came back.

That's not the way it was supposed to happen. At least not in my mind and my plans.

But Father had other plans, and I know, I really do know, that for you they were much better than mine. 

You were so tired, so weary. You held on for so long. It was your time, and both Daddy and I knew it, sorta. We were being prepared, nudges and whispers from heaven. That does help, but only so much.

The waves of grief are less violent most of the time, but sometimes it feels like I'm back in a hurricane, being battered and tossed and my soul cries out for you. 

My sweet boy. I miss you dreadfully. I wish you were here, for just another moment. Except then I'd want more. 

"I didn't want to kiss you goodbye. I wanted to kiss you goodnight. 
There is a difference."

Ernest Hemingway

Living Without You

Sweet boy. 

I'm doing it. 

I'm starting to learn to live without you. (How is that possible?)

But I am.

It doesn't mean that I don't miss you, not for a minute! It doesn't mean I'm not still heartbroken. But I didn't break down yesterday. I still might today. I did cry yesterday, just not the body shaking, soul wracking sobs that so often overwhelm me. 

I was able to let your wheelchair, lift and carseat go yesterday. Oh. . .  That was rough.  

I still don't want to get out of bed and I've avoided going into your room, but that part might be changing. I can consider taking down your bed although that's just a thought right now. Actual actions will be much harder.  I can smile through the tears, at least sometimes. 

I carry the stone heart with me everywhere, all the time. I place it on the nightstand each night, and put it back in my pocket in the morning when I get up. But I don't spend hours clutching it, rubbing it, using it to ground me every day anymore. The first week or more, it was in my hand more than my pocket. Now, it's more of a comfort, a security object that I pull out and hold tight from time to time but mostly just need to have close. 

People ask how I'm doing and I say, "okay, mostly" and it's "mostly" true. 

I look through pictures of you and the early ones make me smile. The ones from December 23rd bring tears anyway. I don't think that part will ever change. But at the same time, I will treasure them forever. 

I still don't know how it is that you are gone though. How did your heart stop? And mine keep going? 

Still miss you, kiddo. And I will until we're together again. 

"Healing is not an overnight process.
It is a daily cleansing of pain, it is a daily healing of your life."

Leon Brown

What's Changed? Almost Everything

What's changed:

No machines humming in the background.

I don't prep meds and do trach/g-tube cares any more.

I don't do breathing treatments.

For the first time in 31+ years, I don't have anyone in diapers.

It's quiet.

I don't order medications (4 different pharmacies) or medical supplies, or make sure we have pre-authorizations and fight for coverage of necessary meds. I don't request nursing. I don't make doctor appointments or rearrange schedules to make it to them. 

I don't track various treatments, medications, and specialists to optimize coverage because I'm the only constant between caregivers. 

I only have one child in public school. Aaron doesn't even have an account there any more. 

And this summer we'll be empty nesters. For most people, there's plenty of warning, lots of advance notice. It's slapping me in the face. 

We're only listed as having 3 people in the house in the church directory.

There are no nurses coming into our home. I deleted or deactivated (two nurses I just couldn't delete) the lock codes. 

We don't have dozens of tanks of oxygen in the garage, or medical supplies in the laundry room and basement.

I'm not planning Valentine gifts for school.

It's quiet.

I am not confined by "have to" schedules or locations. For so long I've laughed when we check into the ER and am asked if we've traveled outside the country. I don't even travel outside of Utah and Salt Lake Counties. 

Sigh... 

I'm no longer a medical mama, at least to a child earthside. 

Now I'm an angel mama. 

A member of a club that includes some of the most amazing people I know, and a club that no one wants to be part of, or have a friend join. 

I've lost a lot of my identity. There's a whole community of amazing people I've come to know and love and respect at Primary's and other places that I am no longer connected with. 

There's a freedom that I never wanted, still don't. And it seems strange. 

It's quiet here. 

Sometimes too quiet. 

Deafening silence.

Everything has changed. 

Except my love for you. Love you forever, little man. 

Grief is so much more than just death. 

~Terri Guillemets

Four Weeks

Aaron, it's midnight, Friday changing to Saturday, again...

It's been four weeks.

I saw your bus driver this morning. 

I had a hard time getting up today. That's really not new. I have a hard time getting moving most days now. I realized about 7:45 that if I needed a shower, and to take care of the dog, and get to work in time for a 9 am appointment, I'd better get in gear.

So I did.

And I as I was driving down the road about 8:25-ish, I saw your bus coming towards me. I recognized your driver. He drove you all of last year, and the very few days you went this year. You actually didn't make it very often. Not that I can see anymore anyway. You no longer have an Alpine school district account, almost as if you weren't there. That hurts, too.

And in seeing the bus on the road, my heart clenched.

All week long it seems people have been talking about the flu. How bad it is. How awful it is to be so sick. Someone even mentioned that they'd heard that people could die from it.

Yeah...

Oh baby...

I know it was your time. I know you were promised you'd live all the days you were supposed to. Your days were known and numbered, and I saw evidence of that throughout your life, sometimes dramatic evidence.

And even your passing showed His glory and His power. 

But that doesn't mean I don't miss you dreadfully.

In a few minutes, at midnight, it will have been 4 weeks since they woke me to say your pressures were low...

How? 

How can that be?

How can you really be gone? 

And how can it hurt so badly? Hurt to breathe? Hurt to exist? How do I exist in a world where you are not?

Oh Aaron, be close.

When I wake in the mornings it's like I'm numb and I have no motivation to move. 

But at night, the ache is so sharp, so visceral. I cry out with the torment. 

At work, I help people learn to feel. Some have told me that feelings are scary, painful. But feeling is part of living. So I try to follow my own advice and lean into the ache. But they're also right. It hurts, more than I could ever imagine. It's no wonder that sometimes we want to avoid the agony.

But at the same time, to not hurt would mean I didn't love. And my boy, I did,  and I do love you, more than life itself. So I'm grateful, in a way, to miss you. You are worth the anguish in my heart. You taught me so much. You make me a better mom, wife, friend, and person. You taught my soul, and in a lot of ways, you probably still do. 

I love you, I miss you. 

"I could have missed the pain

But I'd have had to miss the dance"

Garth Brooks

I'm Angry

Aaron, I'm angry! 

I'm angry that you're gone, you left me behind. 

I'm angry that I was able to go to the store after work, not worry about needing to be home, and then walking into a home where I didn't need to check in and see how you were doing. 

I actually yelled at you (and sobbed) on the way home. "How could you leave me? How could you go?"

I'm angry that I'm getting rid of your equipment, and then when I think I've thought of everything, I remember something else I forgot about. 

I'm angry that we have to create a headstone for you, instead of playing and reading you stories.

Daddy has been so caring and tender. He tried to tell me that we didn't have to do it now. It could wait. Except that's not what I meant. I don't want to do it in the same way that I didn't want to figure out your casket. I wanted to go back, spend Christmas in the PICU and bring you home a few days later. 

I do need to do it for you. There's so little I can do for you now.

Today before work, Michael and I went to your grave and cleaned off the snow, removing the old flowers and leaving new ones. 

Daddy asked me about the scripture I want to put on your marker. He said it almost sounds defiant. It is defiant. I'm defying death. He doesn't get to win. Because of the resurrection, Christ wins, and we will be together again.

And oh, my baby, what a wonderful day that will be. 

I miss you. 

"Here is one of the worst things about having someone you love die: 

It happens again every single morning." 

- Anna Quindlen

Helping Others

Tomorrow more of your equipment is going to others.

Tomorrow your lift (which frankly we never used) and your power chair (which we used ALL the time) are going to another boy who needs them. The lift will let his parents get him in and out of bed safely. Your chair will him raise up to eye level, so he's not always having to look up to people. 

Friday I will drop off your gait trainer for a young man who was severely injured in an accident a few months ago. He's learning to walk again.  

You really liked that gait trainer, but it didn't do much for your weight bearing. Instead, you seemed to think that you were supposed to pick up your legs so your brothers could zoom you around the house. You used it a lot more back when you were able to be off the vent. It was easier then for you to get around. You also used one at school and this one has mostly just sat for the last few years. You were too tired to do much with it, especially after being at school, or coming home from the hospital. 

When these go, another piece of my heart will simultaneously break and come together again.

Or maybe another crack appears and an additional part grows? 

I don't know how it works. I just know it both hurts to have another part of you gone, and helps that someone's life improves because you lived.  

Your bed, your manual chair, and your wheelchair van are about all that's left. The chair can go when someone needs it. I'm not so sure about your van, and I just can't imagine not having the bed yet. There will come a time when we give it away, but right now it's still so much a part of you, of me, that I need it here. The fairy lights turn on every night.  

And I can almost see you... 

"The best portion of a good man's life, 

his little nameless unremembered acts of kindness and of love." 

- William Wordsworth

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

I Dreamed of You Last Night

I dreamed of you last night. 

I actually dreamed of you about a week ago, too, but it was different.

In the first dream, you were in the recovery area of the hospital (instead of the PICU) but you had already passed, and then you just woke up! It was actually a lot like I kept hoping for in those early hours of the 23rd. I kept waiting for you to move, your chest to rise, to come back to me. But you didn't. Not in "real life." In my dream a week ago, you did! I ran out and told the staff, and they were happy but it was almost if they had expected it. But you were still in the mortal body that I knew, the one that held you back and struggled. 

Last night was different. I think we were in a hospital then too, maybe. But you didn't have your g-tube, or trach, or any of the other "accessories" that were so much a part of your life here.  

You did have your smile, the one that would light up the room, and you laughed.  You sat and supported yourself. I held you like I would any other small child.  Your body was whole.  It was you, my son, and you were so happy, and so at peace. And you looked at me as if to say, "I know, Mom, I know you hurt, but I'm doing so great! I miss you. I love you." 

Oh my boy, I just held you and smiled, and loved the feel of you in my arms again. I even woke with a smile, and a sense of comfort that lasted for several hours.

Michael went back to school today and Daddy and I back to work for the first full week since you passed. Someone asked how I could be there. But the reality is, if I wait for the pain to fully heal, I will never work again in this life. I have faith that I will learn to live with your loss, but there will always be an Aaron-sized hole in my heart. 

My sweet angel.

I miss you. 

Please come visit again, soon.

“You know that place between sleep and awake, that place where you still remember dreaming? That’s where I’ll always love you. That’s where I’ll be waiting.”

Tinkerbell

My Son...

Oh Aaron,

We talked and laughed about you at dinner tonight, and I didn't cry. 

We recalled the time at church a man held out his fist for a bump and you turned away, and not two minutes later a teenage boy came by and you reached out to do stones with him. Oh, TJ razzed Brother Lindsley something fierce over that! And everyone laughed, including you.

There was the time newborn Linnaea was crying and you joined her. Except you weren't really crying, you were mimicking her and then pausing to see if we all realized how cute you were being. Twins, in stereo! Except you were a lot older and being goofy. 

Once when I needed a nap, I tasked Andrew with your care. He was trying to do something in the other room, but your pulse/ox kept going off. So he'd come check you and you'd be fine. He'd leave, and you'd alarm again. Checked on you and there was no problem. After several times, he left but peered around the corner to watch you reach down to your cord, yank on it until it alarmed, and then drop it as soon as he showed up. And you laughed. You may not have been verbal, but you sure did communicate! 

You were definitely a Ute fan. And. they beat BYU in football every time they met except once during your lifetime. When watching a BYU basketball game, it came down the the last buzzer and BYU pulled it off! (I can't remember who they were playing but it wasn't the U.) Your brothers were all hooping and hollering and you got excited too! Andrew looked at you and said, "You do realize that's BYU and not the U, right?" And you stopped cold and gave him the biggest stink eye. 

Oh my boy, you laughed a lot and you were happy, but I don't think many people realized you weren't just laughing to laugh. You had a snarky sense of humor. It will be so fun to get you together with your brothers in the next life and watch the shenanigans, 'cause I'm sure there will be some. 

Aaron, most of the time I do okay. I mean, you're free. How can I begrudge you the release from your frail body? But nights are still hard. I cleaned out your dresser and wardrobe yesterday and it was tender but okay for the most part. Then I found the hospital gown you wore last. That was all right, too, until I held it to my nose. 

It smells like you, still.  

When you passed, I dressed you in your shirt that says, "You are loved" but I worried that it might get lost between the hospital and mortuary so we took it off before we left. But I couldn't leave you without clothes on, so I went one last time to the cupboard where the hospital gowns are and chose the brightest one I could find for you. And it was still on you when we went to dress you for your services. 

Oh my baby... 

I still wake between 1:30 and 2 am each night thinking about you. It's quiet and dark, and I no longer sleep in my office.  Your dresser is going downstairs for your new nephew who will be joining the family in the next week or so. 

Are you playing with him and your other nephew coming a few months later? Are you exchanging notes and ideas? Do you and they know how much we love you all? Do you get to bring them to their mamas? 

My little man, tomorrow school starts again, and you won't be here. 

I miss you. How does the world keep on turning without you? 

Grief is love expressed in tears. 

~Terri Guillemets