Zinnias

Dear Aaron,

An old blogpost from August 2023 popped up today, and I followed it down a rabbit hole, of sorts. 

You were heading home from the hospital, Yay!!

It was a relatively short stay, only a few days and on the floor the whole time. And you'd been home for almost nine weeks, which was huge for that year. 

And then I kept reading, following it forward.  Home didn't last long, only a few days, and then you were back and it was kinda ugly. I started crying for that me that was in the ER. I remember it. They paged "urgent response, code red patient" as they quickly walked us back. The room was full, but they moved like a well-oiled machine. Hospital vent was wheeled in, they put in two large IVs and started fluids, and you flinched but otherwise didn't respond. X-rays were done and read immediately. Code status was verified, and there was real concern. But even as I went through the questions, I didn't realize how bad it was; how bad it would be in a few more months. 

At the time, it all felt routine, and somewhat wearying since we hadn't even been home a week. Today I cried for the loss of the innocence I had in those moments. And for the mom I am who now understands too much. 

Aaron, I continued reading your story over the next four months, and sobbed. I didn't know. Unknowing, unconscious, unaward and very much unacquainted with the grief that was coming.  Somehow, I was being nudged,prompted, whispered to, and maybe deep in my soul I knew something. I recognized you were getting more tired, and it was getting harder for you. But your smiles were still so genuine. 

I miss you so much. I ache for the me I was, knowing now what she didn't know then, and knowing what was coming for her. 

You gave us so much love, so much hope, so much life.

I remember acknowledging the miracles we'd already received, and begging for more. 

And then receiving one in your peaceful passing. It really was peaceful, even though my heart shattered. 

And the outpouring of love and support from around the world and close at home.

And being carried through the last 20 months, 87 weeks, way too many days, without you. 

Tonight Linnaea and Elend helped me cut zinnias from your garden to bring inside. Avanlee wrote me a beautiful poem about zinnias and gave me the seedlings for Mother's Day. I'm trying to be strong. I'm trying to stand tall. Linnaea knows how to tell when a zinnia can be cut. You do the "wiggle" test, where you shake the stem, and if it stays firm, you cut it. But if the stem and flower wiggle back and forth, it needs to be left to grow more. 

I'm trying to stand firm. I'm trying to trust the process. Sometimes I think I'm still too wiggly, but at least I'm growing.

And growing can hurt. 

I love you so much, Aaron. 

I miss you.

Love,
Mama

her bloom gives hope,

and those who tread

find respite in

her garden bed

Avanlee Peterson

Through a Glass Darkly

Dear Aaron,

I still go see you each night, although to be honest, I'm drawn more to your garden here than your grave. The other night as I went, I timed it just right for the sprinklers to be going over your spot, and I really couldn't see it.

Oh, I knew it was there. And there was a darker gray outline behind the gray curtains of the water spray. But I only knew it was there because I knew it was there. And in my mind, I could see it, hazy behind the droplets, still with your name, your smile, with the reminder that you are still Compatible With Joy. And those dates that bookended your life here that we crammed so much into. 

And I wondered...

I mean, I know you're still you. You couldn't possibly be anyone else.

A memory popped up from 15 years ago where your Jonny mused to me that perhaps you were the superhuman being and you needed that extra 18th chromosome to be able to tolerate living here among us typical mortals. Maybe...  

Your FIRST first day of school

School started again. You'd be in 10th grade if you were here. Your Linnaea started Kindergarten yesterday and she is loving it. Do you peek in on her? You loved school so much yourself. And you had your own ideas of what you wanted to do there.  

I went to the SOFT picnic on Saturday, only the second time I've gone without you. I remember last year it was windy and hazy, and I didn't worry about your asthma and breathing 'cause, well, you weren't here. And this year it would sprinkle and stop, and then start again. And I didn't worry about electronic medical equipment getting wet. But oh, I wish I still had to. I miss you so much.

My cousin sent me an article from the New York Times called, "Noah is Still Here." I read it and it brought back so many memories. Trached, vented, g-tube dependent. Funny, friendly, outgoing. Playing with siblings and staying up all night. His bed even looks just like yours. It was beautiful, and poignant, and in a way, cathartic. 

Dr. Carey brought me a copy of the AAP News, the monthly magazine put out by the American Academy of Pediatrics. You, my son, are in there.  Back in the 70's, T18 and T13 were lumped together and declared "incompatible with life." That has now officially changed. Routine care, examinations, treatments etc should now be offered to all parents whose babies come with this extra bit. Care should not be denied based on that extra chromosome, and treatment should not vary between institutions. If a hospital cannot provide the level of care needed, the child should be transfered to a higher level of care. And so on. 

And you are part of this. Your baby picture is on the postcards that are being distributed to prenatal centers across the country. 

You touched and continue to touch so many lives, improving outcomes, giving hope, being "Compatible with Joy."

And yet, I still feel the darkness, the cloud, the lack of clarity and I miss your physical presence. 

I guess that's what happens when you love deeply. Those paths you carved in my brain are still there, waiting for something, waiting for you. 

And you're not here.

I know the day will come when I see clearly again, probably even in this life (although I still won't see you). Right now, I'm trying to trust the process. 

I guess that's all I really can do.

I love you, Aaron.

I miss you.

Love,
Mama

"For now we see through a glass, darkly; but then face to face:
now I know in part; but then shall I know even as also I am known."

1 Corinthians 13:12 

Days Are Getting Shorter

Dear Aaron,

We sat around the table tonight telling stories about you. We laughed and smiled, and for a moment it was almost like you were still here. 

Your Andrew is engaged. He found an amazing woman who is so much his match. I think you'd love her, too. They're getting married in November, and it's the first wedding without you. I mean, I guess you missed Matthew and Kensey's wedding because you were still in the hospital, but you were discharged the day of their reception so you made it to that. 

Time keeps moving on...

I was driving last night as the sun was going down, coming back north into the valley from the south end. The light hit our mountains just right so they seemed to glow. As I looked around I could see the mountains on every side, strong, immovable, comforting. Almost like I was being protected, and I thought of you. I remembered all the times I drove north to Salt Lake in the evening after school or work. I don't think I noticed them much then. I was always so focused on getting back to you, trying to figure out how to help you, hoping we could go home soon. 

And ultimately, I guess we did both go home, just not to the same place. Eight-five weeks ago you went home to Heaven, and I drove home with Daddy.

The longest drive of my life...

It's been more than 18 months and most of the time, most of the time I'm okay. I remember you, tell stories, see pictures and it's okay. The pain is there, but it's quieter, maybe deeper, more a part of my soul and less obvious. But sometimes it breaks through and I'm lost all over again. 

I was watching some short videos that Holli sent, and then looked back at others she had shared. The earlier ones, from the aquarium, playing with your blanket, doing math at school and laughing were so fun. But then there were some she sent me from school just a few months before you left. You were struggling, neurostorming was hard, and you looked so tired. Clear to the end, you maintained your spark and your zest for life, but you were done. Your spirit was so strong, but your body wore out. 

I will never forget the last big wonderful smile, ten days before you left me. You were crashing and the room was full. You looked around and gave the biggest grin.

Were you saying goodby? Were you saying thank you? Did you know you were almost done with your race and could soon stop fighting? 

The days are getting shorter, and the nights cooler. Not many weeks ago it would have still been light out but now it's almost completely dark. I'm sitting here with socks and a jacket, and fall and then winter will be here. We're more than halfway through the second year without you. 

And tonight, it is just hard.

Miss you so much.

Love you even more.

Love,
Mama

“Memories saturate my heart and the story of you spills from my eyes."

— Grace Andren 

I Miss You Still, Always

Dear Aaron,

Evenings cool off. By the time I get home from work, the backyard is shaded. Hummingbirds still flit (and chitter and scold each other) but it won't be too many more weeks before they fly south again. 

Days are still hot, but nights are chill. I put a jacket on when I sit outside in the morning.

School starts in two weeks. 

We've almost made it through the second summer without you, and it still seems surreal sometimes.

Other times, I feel like I've woken up, the numbness wears off, the ache duller in some ways but sharper in others. Everyone watches for the first year: the first birthday, the first anniversary of your death, the first Christmas, Thanksgiving, Mother's Day and Father's Day. But the second is different.

By the second time days and seasons roll around, others move on. But instead of focusing on getting through the "firsts," the reality of the "this is the way it will be for always" starts to sink in. 

I'm not exactly sure why the pain has been more intense lately. Maybe because I'm physically and emotionally exhausted. My yard is torn up, my house is torn up. Making them look good again is going to take a lot of time and work. We'll get there, but right now, it's hard. 

You have a new niece coming just before Christmas. Are you two hanging out, playing? Are you telling her about how amazing her parents are? Are you reassuring her that she will be loved so very much by so very many people? I'm guessing her Grandma Amy is right there, too. And your Gramma, and lots of others who love her and love you and love us. 

Oh, Aaron, do you miss me as much as I miss you? In some ways, I hope not. I hope you are happy and at peace. I hope you don't hurt like I do. 

Oh Baby...

Last night, a perfect crescent moon hung over the trees, above the hill, and I imagined you resting on it, looking down. 

I miss you so much.

Love,
Mama

“The weird, weird thing about devastating loss is that life actually goes on. When you're faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking.”

- James Patterson 

Get Me the Chopper!

Dear Aaron,

I'm not sure if I've gone this long without writing to you.

It's not due to lack of thoughts and feelings, in fact the opposite. 

I cried the other day while driving for the first time in a while. It just hit me out of the blue, that ache, that missing of you.

So many things have been happening, and each probably deserves its own post: Michael and Daddy and Matthew's birthdays. There was a huge announcement in the Trisomy world that AAP (American Academy of Pediatrics) no longer considers T18 and T13 "incompatible with life." Such a significant blessing for families! 

And then there's the house stuff. Holes in walls for stabilizing piers, broken water main, and yesterday a massive flood in the basement from a broken sprinkler joint. Sometimes this just feels like too much. 

But on Thursday, I saw a notice about a Go Fund Me and funeral for the man who saved your life almost 15 years ago. And just about everything else recedes a bit into the background.

The day after Thanksgiving, 2010 (can you call it a day if it's still the wee hours of the morning?) you were struggling, big time. I didn't know enough yet to have recognized it earlier, but the signs were there. Dad was in St George with some of the boys for a soccer tournament and as I lay in bed hearing your alarms, I wondered if there was a problem. And I remembered hearing Dad say that I had never been wrong yet when you needed help, so I got up and went out.

I asked our nurse how you were doing. She said, okay, but maybe you needed looking at. (I also had no idea she wasn't the "experienced" nurse she and the company had represented her to be.) I wasn't yet confident in my ability to get you to the hospital on my own so I figured I'd call for help. But the nurse didn't seem worried, so I went down, woke your sisters and went to get dressed before calling.

A few minutes later, one of your sisters was at my door asking if I'd called yet because the nurse said we needed help. I hadn't but quickly did so. You were decompensating so fast!

When the guys walked in, Brian Dowd took one look at you from the doorway to your room and turned to his partner and said, "Get me the chopper!" 

Oh....

He then proceeded to quickly assess you and ask for information. He involved me. (Much later I learned that one of the biggest protective factors against PTSD is the ability to do something in a situation; to not feel helpless.) He asked if I'd ever changed your trach. Yes, in fact the day before. 

"Okay, so you prep it, I'll pull the old one out, and you put the new one in." He then proceeded to bag you up to 100%. He could feel your lung compliance (or non-compliance in this case) and was able to use the bag to help reinflate what I didn't realize was severely collapsed lungs. 

As the chopper arrived and Lifeflight nurses came in, he gave report. Even so, by the time you landed at Primary's you were crashing again. 

He later told me that while working part time and waiting for a full-time position at Lone Peak, he'd been at South Davis, a long term facility for people, and especially children, with trachs and vents. He was super familiar with trachs and vents and all the "fun" stuff that can happen with them. That doesn't happen often with paramedics. 

Had Brian not been on duty that night, I'm sure you wouldn't have survived. I suspect you would have gone Home right here, with your sisters looking on, Daddy and the older boys in St George, and Michael asleep upstairs. 

We would not have known a Christmas with you. You wouldn't have gone to school, met people, influenced so many others. You are part of the reason the "incompatible with life" label was changed. You are the reason many babies have lived. You are the reason I went back to school and now help others with their trauma. 

And without Brian that night, it wouldn't have happened. 

Over and over I've said that Father knew the number of your days. He knew Brian would be on duty that night. Details were arranged so you could stay, stay for just over 13 more years. 

My heart aches for his family, his wife, the community. We will never forget what he did for our family. 

Were you there when he showed up ten days ago? I suspect you were. Please thank him for me. What he did cannot be repaid. 

I love you, Aaron.   

Still miss you so much.

Love,
Mama

“What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal.”

– Albert Pike

Girl's Camp

 

Dear Aaron, 

As I sit on the porch of a mountain cabin and try to write to you on my cellphone, I'm drawn to the contrast of what life was like during your life. Birds are chirping, a hummingbird flits around, and the wind rustles through the trees.

Facebook reminds me of those times: happy times, scary times, and times I mourned for friends. Times filled with beeps and tears, joy and pain.

Fifteen years ago yesterday your echo read "normal cardiac function." After being rushed to the PICU in heart failure a few days earlier, I think you could have powered the whole hospital on my joy and excitement! 

A year later, you went in emergently for your second lip repair due to a massive hematoma that we initially thought was a significant infection. Having received the news that the full repair had been done instead of needing to leave the wound open with drains, I walked into the PICU and realized my body's reaction to the smells and sounds I was hearing. It was the first time I wasn't so focused on getting to you that the sensations registered in my conscious brain. I felt an immediate tightness, and increase in my own heart rate. 

And then the next year it was my friend's son, the little boy who lived only a couple miles to the west of us, who lay so still, so fragile, and on the cusp of his own journey back Home. 

And then on through the years, until you left and now I'm here with the girls from church, and we have grandbabies in our life. Linnaea is the only one with her own memories of you, but the rest will know you through pictures and stories. 

And now you experience it all. The camping, the sunrises and sunsets. Do you fly with the hummingbirds? I see so many this morning. Or scamper with the chipmunk that just ran across the porch? 

Do you children that came to teach us in your tattered bodies with perfect souls get together and look down at us, sending love along heartstrings that are still so strong? 

We miss you. 

I miss you. 

Love, 

Mama 

"Heaven is under our feet as well as over our heads."

Henry David Thoreau

The Body Remembers...

Dear Aaron,

I've been cranky, irritable. My birthday was Wednesday and it just felt odd. There's some things going on with someone that is near and dear to me, and all I can do is pray and listen. So I chalked it up to all that. Plus unwanted home repairs and really hot weather.

But then Facebook reminded me of 15 years ago.

Fifteen years ago last night I was also cranky and irritable, and antsy. I spent about an hour on the phone with the on call pediatrician trying to figure out what to do. You were "sorta" okay. I mean, you looked pretty good except something was bugging me. We decided to just turn up your oxygen when you were eating to give you a bit of a boost. Now at the time, "up" meant from 1/32 of a liter to 1/16, barely a whiff. 

Fifteen years ago this morning, you spit up (not a lot, and not the first time) but I'd had it. I told your dad that I was sure I was neurotic and paranoid, but I needed a professional to tell me that so I was taking you to the ER in American Fork, maybe they'd do a breathing treatment and I'd be back in a couple hours, maybe longer if they were busy. 

Now that statement should have given a clue to my clarity of thought. No four week old baby, and especially one that is compromised, is going to walk into an ER, get a breathing treatment, and leave. Yeah, it didn't happen that way. 

They diagnosed pneumonia, and I was so confused! How could that have happened?? They weren't certain although some ideas were tossed around, but the long and short was they told us they were sending us by ambulance to Primary's to be admitted. At the time, the only thing I knew was that Primary's was somewhere towards the north end of Salt Lake County; good thing the ambulance driver knew where we were going. 

We were admitted to the floor, antibiotics were started, and my head swam. The next morning however, things changed. Your heart patterns changed, the nurse heard things she didn't like, and we landed in the PICU with a new diagnosis: heart failure.

Sigh...

And now I know why I was so on edge yesterday. 

That ten-day stay left its mark on me. The learning curve was sooooo steep! And the lack of sleep was significant. 

When we did discharge, I asked our attending what the outcome would have looked like if I hadn't taken you that Sunday morning. She gently told me that if I had waited until I could identify a problem, they would have been able to make you comfortable but otherwise.... 

That was the first time, but certainly not the last that I didn't know why I needed to get help but went anyway. Each time further reinforced how God knew your days and you would live every one that He designed. 

Even that last admit, December 2023, we sought help in time. But that time, that time Flu A ravaged your already tattered heart. He knew it was your time. He called you home. And I still, still wish it had been different. 

But even though I wasn't done (and never would be), you were. In His mercy, He took you Home. I trust that when it's my turn, you'll come get me. I miss you, Aaron. Thank you for all you taught me.

And I suspect that there will always be dates that my body remembers, even when my brain does not. 

Love,
Mama

"Our bodies are the texts that carry the memories and therefore remembering is no less than reincarnation"

– Katie Cannon