Remembering Mama...

Dear Aaron,

I'm down with Grampa and Aunt Maurie. It's weird being at Gramma's without her, strange for all of us, especially Grampa. Do you two hang out with us? Are you here, too? I found memories I wrote six years ago for her 70th birthday. Before she left, I shared it with my sisters and Aunt Liz read it to her. Oh, I miss her! I miss you!

I think everything I learned about love and tenacity and perseverance I learned from her and Daddy.

I remember…

I remember pressing noses up against a glass window in a hospital nursery, watching with Maurie as you lifted up our brand new baby brother for us to see the first time. 

I remember itching, and lots of moving boxes and movers, and not realizing you were doing it all on your own when we all had chicken pox 'cause Dad was TDY and no one wanted to watch kids with chicken pox.

I remember my “Becky doll” made so I would have a “pillow” on the overseas flight to Taiwan so soft, and all mine, and I slept with her all the way into college.

I remember the look on your face when you realized Maurie was missing in the airport, and you were alone with three little ones.  It was probably panic, but I wasn’t worried, ‘cause I knew you had it under control.

I remember waking up in the night on one of those flights hungry because I slept through dinner. You had the stewardess bring me some food, even though they had already cleaned everything up.

I remember Maurie falling and hitting her eye, Dad was out of town, and you just handled it.  I’m sure it was really hard, but I never knew that.

I remember comfort in the night when it was dark and the wind and rain were so scary. 

I remember you and Dad working together in the kitchen in the Philippines making fried rice for dinner, and trying to sneak onion and pepper, and realizing I really didn’t like them!

I remember being proud of my mom because you were far and away the most beautiful woman around, and we’d go on bike rides and play outside.  I remember you working with an old wringer washer  and putting our clothes through it.

I remember a birthday party at Sugarhouse Park (I think) with great big trees and a pinata.  

I remember figuring out what “c-i-r-c-u-s” spelled and yelling it out when you were on the phone and saying you hoped to be able to take us.  You did, and it was amazing!!  What I didn’t know was that it was the night before Tricia was born.  

I remember you bringing that same baby sister home and showing us, but telling us we had to wash our popsicle-sticky hands before we could touch her.

I remember you singing us to sleep with “Stay Awake” from Mary Poppins.

I remember a tiny apartment in Colorado where we would hide in the cupboards and play, but I didn’t realize it was tiny, or that we were “camping.” 

I remember cakes, lots and lots of cakes, with thousands of tiny frosting stars.  I remember a wedding cake, that I had no idea you were nervous about.  It was beautiful, and you could bake, cook, make anything!

I remember Brownie girl scouts, and learning the “proper” way to set a table.  

I remember the pain on your face when we tried to “run away”, and on the day you were making doughnuts, too!  (What were we thinking?)

I remember how you “mothered” so many cadets, realizing now that they really weren’t much younger than you were.  

And how you did laundry for so many missionaries.

I remember spaghetti for Sunday dinner because you could expand or contract it easily, since you never knew going to church how many you’d have at the table after. It wasn’t until many, many years later that I realized you were also trying to make the food budget stretch. You never turned away anyone from your table, money was never a factor in feeding anyone. 

I remember you traveling to Denver (which seemed forever away) to help take care of Grandma Organ, and how when we were there too, you would tend to her every need, but also making sure Grandma’s dignity was preserved.

I remember road trips, with lots and lots and lots of singing.  It never crossed my mind that you might get tired of singing.

I remember hot summer days in Texas at Nana and Papa’s pool, and your laughter with your sisters and brother.

I remember playing in the ocean, and horrible sunburns and you giving me Tylenol and cool compresses for the pain.  I remember you made our swimsuits for the trip, and they were the best ever.

I remember a quiet, dark, snow-filled night with another baby sister inside a hospital room.

I (vaguely) remember you were there, all day long after my surgery, talking to me, putting ice packs on my face, and how badly I wanted you once I truly woke up that night, and how upset you were with the corpsman who had refused to call you. You had made him promise that if I wanted you he’d call, but you’d been there all day and just left, and he wouldn’t bother you. 

I remember driving back to Pennsylvania, and occasionally stopping so you could stretch.  There were seven of us in a six passenger Jeep and you were very pregnant with Michelle.

I remember you taking us to church in Pennsylvania by yourself (just like you’d always done when Dad was gone), to a tiny branch, when it would have been so easy just to stay home for a few weeks instead of wrestling five kids under 12 while very pregnant with a sixth. 

I remember another tiny apartment in Alaska, where it was dark and cold, but again, I didn’t realize it was all that small.  
 
I remember you gently washing my hand after a kid had been kicking it on the bus.

I remember seeing you curled up in your rocker, crying, when you learned Grandma Organ had passed away.

I remember you driving to and from a dance in an almost blizzard because it had been so important to me to go.  It was bad enough on the way home that you had me watching the blowing snow on the side of the road, trying to see the lines as the snow drifted, to make sure we were still on the road. 

I remember the many, many very early morning (4:45!) rides to seminary in Alaska, and then the somewhat later, but still early, rides in New Jersey. 

I remember you making my corsage for prom, and having someone come do my hair.

I remember telling you that a guy tried to pick me up and give me a ride when I was walking to work.  You never questioned whether or not it was true.  I’d fought you on having to walk from school to work.  But I also never, ever walked to work again.  Either I had a car, or you came and got me. 

I remember going to a cast party after a play.  You dropped Maurie and a friend and I off.  You wouldn’t have been more than a mile or so on your way back home when we realized we didn’t want to be there.  We called home (no cell phones then) and Dad told you and you turned around and came and got us.  There was no judgement, no recriminations, just help.

I remember you wallpapering the kitchen, our bedroom, painting various rooms in different houses, wherever we lived.  I remember the bright yellow in the smallest room in Colorado that really opened it up.  And then you had to repaint it to make it the boring white again when we moved.  

I don’t remember ever “living” in boxes, no matter where we lived.  I learned later that you would stay up all night long unpacking so that we could feel “at home” as soon as possible.

I remember you always tried to be at church, even when someone had hurt your feelings.

I remember telling you a friend had been kicked out of her home because she was pregnant, and asking what you would do if I was.  You told me you’d cry and love me, and cry and love me, and cry and love me.  I knew then that you’d never give up on me. 

I remember you telling me that I was beautiful when I was heartbroken over a guy, and that others would see me the way you did.  I knew you were wrong, but I also knew you believed what you were saying.  

I remember you coming downstairs and telling me that Grandma Brown had died, and how you held me as I cried.  

I remember the finals care package you sent me my first semester as finals week approached.  I was so surprised, and so touched.  I didn’t even know there was such a thing

I remember you flying back to New Jersey to talk to a family I wanted to nanny for.  It was important to me to go back, but it was important to you that I was in a good situation.

I remember your friend bringing me a dozen roses from you on opening night of The Sound of Music because you couldn’t be there.

I remember your comfort and counsel, and the bread and cookies you brought me in college when I was worried because I was losing weight.

I remember calling you when I was discouraged early in sales and telling you I couldn’t get anyone to buy from me.  You told me that if I was in it for myself, I needed to get myself back home.  But if I would focus on the people and how my products could help them, it would come, and even if it didn’t, I would still be touching people.  Do it for the right reason, or come home and do something else.

    
I remember the candy bars you would sometimes slip into packages you sent after you moved to Arizona.   

I remember you helping with each baby, you taking the girls in when I was in bed with David.  

I remember when 9/11 happened, all I wanted was to talk to you, to hear your voice.  I needed your grounding.  

Mom, you’ve always been there for me, whether right there by my side, or helping in the background.  You took over when Dad was gone on assignment, taking care of things, running the house and loving us. 

You are the glue that’s held us together.  

 
“I do not doubt my mother knew it.”

I love you, Mama.

I love you, Aaron.

Love,
Me

"An old family photo — this still moment in time, this moment when there was still time." ~Robert Brault

How Do I Write It, What Do I Write?

Dear Aaron,

How do you write final words for someone? 

I mean, I guess I did for you, but honestly, that one was started and edited a few times over the years. In the end, at the end, all I did was add in some details. 

But Mama....

Well, she lived a lot longer than you did, and I'm struggling to find the words for her obituary. I feel like I could write a novel and not get it right. 

Last night was the Christmas concert. Do you remember when you came? Were you there? I hoped to feel Mama and struggled because I couldn't. I stood with Julianne Rowley and I know tender feelings were hard for her as well. Her mom always sang with us and she went Home in September. This was the first time without her. We went through most of the concert, and it felt good, but I was missing that spark I've felt before while singing. 

And then it happened, for both of us. 

During "For Unto Us a Child is Born" I was overwhelmed with emotion. She was there; I felt her. Following that was "Good Christian Men, Rejoice!" It's a good thing I knew my music; I couldn't see it.  At least I could still see Marvin so I knew when to come in and cut off. "Christ was born for this, Christ was born for this." "Now ye need not fear the grave; Jesus Christ was born to save!"

Yes, I know He was, and I am so grateful. And at the same time, oh, I miss you and I miss her. 

Aaron, be close. It's been a long time since I felt you near. I wonder if you always are, and I just don't know what it feels like for you to be completely gone. But I can't see you, and I don't hear you, and I don't take care of you anymore...

I miss you so much. I miss Mama. And it's been 21 years earlier this month since my Grandpa Brown died and 13 years since Nana and Papa were buried in Arlington. December. Is. Hard!

And beautiful, because of hope, because of Him. Both hard and beautiful at the same time.

I'll keep going. I can see your smile encouraging me; I can hear Mama saying, "of course you will." 

Love you so much...

Love,
Mama

"And Jesus said unto her, I am the resurrection and the life;
he that believeth in me, though he were dead, yet shall he live."

John 11:25

Missing You, Both of You

Dear Aaron,

It's been a year tonight since I've seen your smile.

Man, that was an amazing one! As the room filled up, your face lit up. Were you telling us good by? 

Was that last week before your last admit a celebration?

Were you trying to leave us with hope and memories?

Was Gramma?

She wanted Thanksgiving so much. Honestly, when she asked everyone to make plans back in September I didn't know if she would even be alive. But she was, very alive. It was hard for her to sit and not be up and doing, but oh, her smile. 

You know, kinda like yours. 

And then, like you, she was gone not even two weeks later.

One last rally to leave us with...

One more chance to make memories...

Do you know, even after that last-minute decision to jump into the picture with you and Mr. & Mrs. Claus in the PICU, I almost didn't take the one with my parents before we left?? You'd think I'd learn.

Or maybe I did? I mean, I took the picture. But like you, I figured there'd be more opportunities. 

Oh, I miss her. I miss you. This just hurts!!

Eight days to her funeral, ten to your angelversary.

I try to stay busy; there's lots to do. But underneath, my heart aches. 

So are you two in the heavenly choir together? Do you get to sing praises on Christmas? You both love music so much, I can't imagine you're not part of it.  

Snow fell and stuck for the first time this winter. Your butterflies' wings were heavy with it so I knocked it off.  It looked so clean, and so cold. Her spot will never see snow, and while it is very different with no mountains around it, it is also peaceful and beautiful. 

I love you Aaron, so much. Stay close, please?

Love, 
Mama

"I discover that grief means living with someone who is not there."

— Jeanette Winterson

Oh Mama...

Dear Aaron,

So are you guys hanging out? Did you come get her? Were you in the room in Arizona with her and Grampa and Liz and Chelle and Tricia?

I may be a Gramma now myself, but oh, I still need my mama.

I sit here in tears. Like you, I think she was ready, but we were not. Years ago Grampa asked me gently if I would ever be ready to let you go.  And I replied quickly, "no". It's the same. 

Peace and agony. 

So grateful to be her daughter.

She taught me so much. 

And tonight, tonight it just hurts.

I'm sitting here listening to music, and the song, "Just Let Me Cry is playing.  I know I'll find joy again, but right now, oh my boy... 

Last May I told her I couldn't do another loss this year because i knew that would get her to let me call the ambulance (which she needed!). But in saying that, I knew I could if I had to. I said it to push her. Before we left Arizona not even two weeks ago, I told her I was sorry. That I said it to bully her. And that if she was done, she shouldn't stay for me because although I would hurt, I wouldn't quit. 

I think she rallied to get to Thanksgiving, and it was wonderful, but oh...

Last night when it became obvious that she was leaving, I asked her to find you, to hold you, to care for you until I get there. 

So give her a hug for me?   

Hold each other close?

Aaron, Mama, I miss you both so much!!!

Love,
Mama/Becky

"Just let me cry

I know it's hard to see

But the pain I feel

Isn't going away today

Just let me cry

Till every tear has fallen

Don't ask when and don't ask why

Just let me cry"

Hillary Weeks 

I Didn't Know, I Couldn't Know...

Dear Aaron,

A year ago today was a fairly normal day, at least I thought it was.

I had no idea that the flu virus was already making inroads on your little body. 

A year ago today, I posted this picture, thinking I knew what it meant to rely on God to hold me together.

I had no idea.

I'm still not sure I do. I mean, I feel like I have and continue to fall apart into a million pieces. 

But I also know that He holds me, and somehow, holds me together, or fills in the cracks, or something...

A year ago tonight was the last time you slept in your bed. 

I woke in the morning to a phone call from your nurse:
"Aaron's heart rate is pretty high."
I'm thinking, of course it is, you just gave him albuterol, but asked, "How high?"
"140's"
Oh.... that's not albuterol. "Have you taken his temp?"
It was 104*.

We started Tylenol and Motrin. I watched you closely. Your sats were (mostly) okay but you crept higher on your oxygen. We went to the hospital for a scan because of the pockets of infection that had been found on your spleen. We needed to know if they were getting bigger, smaller or staying the same because your body was too frail to fight things off. There was no change.

And by about 10 o'clock that night, a year ago tomorrow, you needed more oxygen than we were able to keep you on at home.

I called 911 for the last time.

One year ago...

Sometimes it seems like so long ago

Sometimes, especially this past week, it seems like it just happened a few weeks ago. It is unreal that it has been a year. You only had two more weeks to live, and somehow, I didn't realize. 

I mean, on a deeper level, maybe a cellular one, I think I sorta knew? I was much more anxious than I had been in a very long time, but I chalked that up to wanting to be home for the Christmas season, trying to find my sea legs at work, and getting in enough hours to take time off between Christmas and New Years, which was really hard while also juggling the hospital. 

As I drive home at night, I see the stars, the crescent moon, the lights shining on your stone, the small Christmas tree and the butterfly shadows fluttering at your site. The black mountains silhouette against the inky sky. 

I see a lone pine tree lit up on the mountain. I'm told it is done in memory of someone who died; I know I've seen it shining, all by itself in the dark surrounding every Christmas since we moved here. 

The darkness deepens, my heart aches, and yet there is light. The light is small, dim, but I can still see somewhat. And my headlights light the road in front of me. 

Are you like my headlights? Do you show me the way? 

I miss you so much, Aaron. It's been a while since I've cried as much as I have the last few weeks. It's hard processing this. I love Christmas; I have my whole life. And now I have this holiday with all the lights and cheer and joy juxtaposed on you're leaving me, and the darkness, the ache, the overwhelming grief.

I just don't know how to do this. 

I'm struggling.

I love you so much. I miss you so much.

How has it been a year? Only a year? And how has it not been so much longer since I held you?

Love,
Mama

Blessed are they that mourn, for they shall be comforted.

Matthew 5:4

Your Last Week at Home

Dear Aaron,

A year ago you had one week left at home. 

A year ago tomorrow was the last time some of your siblings saw you alive.

I had no idea what was coming, which was probably good. 

It was a good week, a happy week, a laughing, playful, enjoyable week. A week where I looked forward to the Christmas break and a slowing down of life. The house was decorated and I anticipated sitting in the evening, watching you enjoy your penguin lights flashing on and off, and your smaller lights cycle slowly over the next several weeks. 

I was trying to get all my billable hours in at work to be able to take the time off work between Christmas and New Years. 

I was looking forward to getting the family all together for Christmas.

That's not what happened, and I miss my innocence.

I'm grateful we had those last few days of joy. 

But now, now my body and my brain keep replaying....

Only one week left at home.

Only three more weeks here on earth. 

And just like that, the tsunami washes over me.

I have to keep going, keep seeing clients, do my own Christmas shopping, and somehow continue to process you being gone when all I want to do is crawl in bed and sob and pretend the world doesn't exist.

Oh Aaron....

Love,
Mama

"Grief is a wave that comes and goes in the most unexpected ways."

- Unknown

Your Light...

Dear Aaron,

December.

It's December.

The last month you knew here, earthside of heaven. 

Nine days from now will be the last time you woke up here. The last time I called an ambulance. The last time I signed out a nurse here. The last time for so many things...

We spent Thanksgiving in Arizona this year. Gramma and Grampa are doing better, but that's a relative statement. I hadn't realized how much Gramma's stroke and then later septic shock had worn on her. I just saw her in May. I didn't know...

It was a good weekend, actually a really good one. Everyone except you and Michael were there from our part of the family, and almost everyone else was there, too. 

I'm sitting here listening to Music and the Spoken Word and he's talking about candles, about how their light is small, but their influence can grow. They light other candles, other light spreads, so tiny and yet so powerful. I think that's you.

This season is so fraught with high emotions for me. I love Christmas, the lights in the darkening world, the smells, the warmth from the cold, family, love. And yet, you left me. 

And the world felt (and sometimes feels) so dark again. 

I miss you, Aaron. I want to remember, I'm afraid of forgetting. I cherish the memories that come on Facebook because I have already forgotten so many things, the little day to day challenges and triumphs. I remember the big ones, but the little interactions that were just part of life with you make up the essence of what is gone.

Please be close as we count down these last days.

Please...

Love,
Mama

"It's better to light a candle, than curse the darkness."

Eleanor Roosevelt 

My Hero

Dear Aaron,

For so many years I expressed gratitude for having you here, trying to figure out Christmas presents, taking care of you while many other parents were decorating graves.

Now I decorate yours and it seems so inadequate. 

Yesterday, Sophie brought me your Grinch. She carried it in and looked at me like, "So where is he?" She was actually being very gentle.  I sat there with it in my hand and traced the three-sizes bigger heart with my finger. 

Your heart was so big, in every way.  I laughed through tears as I told Daddy that had the Grinch's heart really grown three sizes, he would have been in trouble. A heart isn't supposed to be big. It is not good for it to work that hard. But yours did. And it did until it was too much and then slowly, gently, ever so quietly, it stopped.

And you were gone.

It's been 14 years today since the neighborhood woke at 4 in the morning to the sound of a helicopter landing in the street. We bundled you up (it was negative 3* out that morning) and loaded you up. A sweet neighbor up the street waited in the driveway to take me. 

When I got to Primary's, the RT told me he'd heard that your returns were in the single digits. I had no idea what that meant, but for the next six days as we struggled to find vent settings that would support you, every time an RT walked in the room I asked, "What does this number mean? What does it do? What do I want it to say and what do I do when it's different? And how much do I care?"

Talk about a crash course in respiratory therapy.

I found out several years later that the home equipment company had been told this would be a very short staffing. You wouldn't live more than a week or two at most but it was important to us to get you home and so they did. I guess they didn't realize the size of your fight, or the determination I had. You became a beacon of hope, not only for other families but also for hospital staff. 

You have left your mark on this world.

I just still wish you were still here doing so. Since you're not, I try to go forward and do it for you, in your name. I'm joining another committee at the hospital in January. This one is also near and dear to my heart as we work to help children throughout the hospital. 

I do it in your name, for other children, for other families. 

For a child who never spoke a word with his own voice, who never took a step on his own, who never even sat unassisted, you have influenced so many. 

My hero.

Love you, miss you. 

Love,
Mama

"We do not have to rely on memories to recapture the spirit of those we have loved and lost – they live within our souls in some perfect sanctuary which even death cannot destroy."

- Nan Witcomb 

Christmas is Coming

Dear Aaron,

Christmas is coming.

I love Christmas: lights, decorations, music. Warmth, family, love. Candlelight, warm blankets, friends.

And several years we "enjoyed" the hospitality of the Hotel on the Hill during December. But that's okay. You liked it there. You actually loved it; maybe because they loved you, too. It was very different than at home. Instead of Christmas carols, we were serenaded by ventilators and telemetry alarms, IV pumps and feeding pumps. We had the constant lights of the PICU, but there were warm blankets and friends, and love. 

Everywhere you were there was love.

I put up most of the Christmas decorations this week. All that is left are the ornaments for the tree and a surprise Dad and I are working on. Just like pretty much every year, I did find an ornament we missed when we took the tree down. Usually it's one of the little glass or crystal ones, but this time it was one Grampa made for me a few years ago with his lathe. He doesn't use it anymore. He's getting older, more frail, and I wonder how much longer before he and Gramma join you. Selfishly, I hope it's still a ways off.  

I know I'm decorating early. Thanksgiving isn't until a week from today. But this year I need it, and I need it now.

There are only five stockings on the wall, just five. The big kids who are married have their own, Michael is on his mission so we'll send gifts to him, and yours... I just couldn't hang it with the rest. Those stockings will get filled, and I want to do something with yours, but it won't be the same. So it hangs on a different wall.  I need it up. I need to not feel like you're being erased, but it's still different. And it's hard. 

I miss you, Aaron. I miss watching your eyes light up as you see the tree, seeing you enjoy the dancing penguins above your bed, needing to turn those off so you would actually go to sleep. I miss the gentle Christmas lights we wound around your play bars that would gently fade in and out through the night. 

Christmas will be different this year. For the first time in 33 years, we won't have any children (okay, or adult children) sleeping here on Christmas Eve. We had two Christmases back in the beginning of our marriage but that was a long, long time ago. 

And then ten years ago, you and I spent Christmas in the PICU. I thought we were going to do it again last year, but I guess there were other plans. I came home with Daddy, without you, and you went to spend Christmas with Jesus. I bet it was an amazing Christmas. Did you sing with the angels? Were you there? You love music so much, I feel certain you sang your heart out. 

Will you check in on us this year? 

Please?

It's been 11 months, 48 weeks, on Saturday. One more month and it will be a whole year since your heart stopped and mine, somehow, kept going. 

I really don't know what to expect Christmas to look like. 

I'm so grateful to be your mom. I love you.  I miss you.

Love,
Mama

“The most important thing is, even when we're apart ... I'll always be with you ...”

- A. A. Milne 

A Year Ago Today...

November 19, 2023

Dear Aaron,

It's been one year exactly since your last (typical) discharge. 

We had such high hopes! We thought we had a good plan in place. The PICU docs (along with cardiology, pulmonology, infectious disease, and others) worked really hard to optimize your health. We finally conquered that nasty tracheitis that caused so much trouble. 

And when we left, you were smiling.

That smile was part of what Dr. L and I talked about ten days after you died.

She remembered it, remembered the joy you exhibited, told me it was proof that we were NOT doing too much, that we were supporting you in the life you loved. 

Oh baby...

It's been almost a year, not quite five more weeks until your angelversary. 

I don't often get caught off guard anymore, not nearly as much anyway. Smells and sounds still do me in. 

But the fridge . . .  

Your meds and food were always on the bottom shelf on the left. Everything else in the fridge gets moved around, always has. But that was where your things always were, for 13 1/2 years. Just shy of 11 months without them, to see that empty space still cuts me.

I miss you, Aaron. I go by your grave to check on you every night after work. I mean, it's not like you're really going anywhere, or there's much to do for you, but I have to. I don't now how to not do the little I still can. 

So I go by and replace the butterflies that get tattered in the wind. I smooth my hand over the granite, gently touch your smiling face, and trace the letters of your name.

I guess you're all tucked in.  I covered you with your weighted blanket, the one that says "I love you" over and over and over on it, just before we closed the casket. 

And my heart still aches...

Miss you . . .

Love you.

Love,
Mama

"These days grief seems like walking on a frozen river; most of the time he feels safe enough, but there is always that danger he will plunge through."

David Nicholls 

Heartstrings

Dear Aaron,

There's a book I often read with kids called "The Invisible String." I've now read it enough that it doesn't (usually) choke me up, but I had to prepare myself initially. 

Jeremy and Liza are trying to figure out how far the invisible string reaches. It goes from school to home, between best friends, all the way to the jungle, France, even outer space, and then... 

Then Jeremy quietly asked, "Can my String reach all the way to Uncle Brian in Heaven?" 

"Yes . . . . Even there."  

Even there, all the way to you in Heaven.

I know my string reaches there because it hurts when it gets tugged. 

Last night I looked at the night sky, the full moon sailing among very light, whispy clouds, bright enough that it could be seen, but overcast enough that I saw no stars. And I wondered...

Do you see it, too? 

I felt the tug of another heartstring yesterday when I got the mail. Inside I found a package from a dear friend I've never actually met in person. From the other side of the world, she thought of me. The two gifts she sent were what my aching heart needed: an acknowledgement that I will always talk to you and miss you, but I know you are at peace; and a reminder that strength comes through battle. She fights her own battles and knows just how debilitating loss can be. 

Your smiling face greeted me today. I have no idea why I posted this one a year ago. I mean, it was taken in July at Joseph and Sarah's wedding, and you were in the hospital in pretty rough shape. In the PICU, having survived hemorrhaging from your lungs and working through newly discovered pockets of infection on your spleen. We were working towards home, having been there for a month, but still not quite ready. But somehow, I put this picture up, and today it brought a smile to my heart, along with tears to my eyes. 

Forty-seven weeks, 47 and so many, many more to go. 

I'm trying to get ready for Christmas. I hope to put up outside lights tomorrow, and maybe the inside decorations next week. I'm ordering presents and making plans. And I wonder if part of me is also just trying to stay busy to avoid the hollow ache of you not being here. It still sometimes seems surreal. I watch the 19 second video I made a couple weeks ago about your room transformation . . . Or I squint in there, hoping to see your shadow, your ghost. But you're not here. 

Does my string pull so hard because you're tugging on it?

Do you miss me as much as I miss you? 

Do you watch over us?

I pray that you do.

I miss you.

I love you.

Love,
Mama

“People who love each other are always connected by a very special String, made of love. Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.”

- Patrice Karst 

46 Weeks, and Tender Mercies

Dear Aaron,

As I drove home on Thursday, to the east the black mountains with their white peaks were silhouetted against a darkening indigo sky.  At the cemetery, I looked to the west and the last oranges and reds of the sunset hung over the western mountains. 

I felt sheltered, embraced, protected by the mountains. That might seem silly. I mean, you're still gone, not coming back, but they're sturdy, constant, and (hopefully) immovable.  They were there long before you or I were here, and will be long after I'm gone, too.

It's 46 weeks today, Aaron.  And 45 since we close the casket and I last saw your face, touched your hair, kissed your cheek, tucked you in. Today felt so, so lonely...

And then I got home and found a package on the porch.   

Just after you passed, a friend reached out and said she wanted to bring me a special blanket. She lost her own angel just over two years ago and somehow, God knew that I needed to receive this today. Not just after you passed, not on your birthday, not after you'd been gone six months or even on your angelversary.

Today. On a day that was just a normal, typical Saturday for everyone else, but when I felt alone and lost. 

I know she is close to Him, and her heart follows His promptings. I am so grateful...

Six years ago today we took a family picture. Joseph was leaving on his mission; we had everyone here, but just barely.  We had a tiny window of time. 

Deborah and Bronson were home from their honeymoon and Joseph was going to the MTC on Wednesday. And you were sick. How sick? Well, sick enough that I had bagged you a few times at church. I knew we needed additional help, but also, Joseph was leaving. While ultimately, you were here when Joseph came home (and Andrew after his mission) we couldn't expect it. As I read back over my writing from that November, someone had asked me when I would stop being worried that ________ (fill in holiday, birthday, picture, whatever) was the last time it would happen. I replied, "when one comes and he's not here," and choked back tears.

So we took the picture, and I called an ambulance. Sigh... 

Now you're not here, but I can't take a picture without you. And I have no idea how to do the holidays without you. And so I won't. I mean, we'll still do pictures and holidays and birthdays and hopefully weddings and so on. I figure you'll be here in spirit anyway, so I have a stand in for you. Because you're still important, still a part of my heart, and you always, always will be.

I love you, Aaron.

Love you so much.

Love,
Mama

“Heaven doesn’t ignore cries of a broken heart.”

Toba Beta 

Last Year...

Dear Aaron,

I'm sitting at lunch and just have to write.

Snow stuck to the grass for the first time today, and the swirly flakes and the cold somehow reminded me so much of you.

 We bundled you up so well! Hat, gloves, jackets, blanket poncho and of course the fleece-lined minion stroller sack one of your bus drivers made. Plus heated stuffies and rice sacks. You were toasty!!

Fourteen years ago today you went in for your first surgery. You got a g-tube and nissen and were off to the races. We found out you needed a trach, that somehow, inexplicably, you were managing to breathe through airways so collapsed that your doctor was shocked you were able to move air at all.  And yet, you did. 

My last picture with you before you left.

I had forgotten that this was the day, and yet, I hadn't. I woke with a headache and a total lack of desire to get out of bed. And that carried over into my morning preparations. It was only when Facebook reminded me that it put it all together. 

And November brings Thanksgiving, which is a wonderful holiday, and also the day that each year I pled with heaven to spare you for just one more Christmas. Every year that is, except last year. Last year you were freshly home from your longest hospital stay and we thought we had a good plan. Last year I didn't take a picture of you in front the Christmas tree because things were just so busy and the week after Christmas would be so much more relaxed. Last year I didn't even consider that things would change. 

 Last year they did.   

December 23, 2023. I decided it was time
to stop putting off pictures.

And now we have this year. Or I have this year. You're not here. We're coming to the end of a year that never knew you, and I don't know how to "do" this year. 

I mean, I guess I'll figure it out. It's not like it's going to stop or go away. 

But sometimes, sometimes I wish time would stop. Sunday afternoon, I laid down on the daybed in my office, and when I woke, for a brief second, I saw your room the way it was a year ago, with you there, and was surprised all over again to blink and watch it change. The piano instead of your bed, the couch instead of your armoire, silence instead of your machines. 

I'm so thankful for you, really, honestly and truly. And again, given the choice of having to learn to live without you or having never known you, I would choose this pain every single time.

But still, it hurts...

Miss you so much. 

Love you even more.

Love,
Mama

Time is the only thief we can't get justice against.

~Terri Guillemets 

15 Halloweens

Aaron-delorian, showing us The Way

Dear Aaron,

It's Halloween. 

In past years, it was my deadline for people to have their flu shots. Honestly, this year I don't know who has and who hasn't. I know I've had mine, and Michael got his before ging to Arkansas. I just don't know about anyone else.

I look back through the years. Three times you were in the hospital, and a couple more you were kinda sick here at home. Frankly, out of all the holidays, Halloween takes the cake (or candy?) if you have to be inpatient. 

I think you only got to go out trick or treating once, in 2012. You wore the clown costume that each of the older kids wore. I hadn't allowed myself to even consider that you might be able to, but you did. 

And last year, you were a Mandalorian, or as Dad calls you, the Aaron-dalorian. You showed us The Way. Frankly, you were so, so sick that we didn't actually even put it on you, just draped it over you. 

Trick-or-Treat, what a treat 2012 was

I had to laugh at myself as I went through the pictures and found the year that I held a full-blown argument with myself over whether or not you should go to school. You were not quite better from being sick, but "it's Halloween! You have to be there!" And the other side of my brain replied, "He doesn't care." "But I care!" ('Cause you know that's the most important thing, right?) Anyway, I did finally decide to be reasonable and kept you home, and when you did go, you wore your costume then, my little Superman. 

You were Superman, and a clown, and The Boy Who Lived (and lived and lived, until you didn't). You were a minion, and a pumpkin. 

Tonight, Rachelle Adams brought by your flowers, the domes for your siblings, two ornaments, and the large arrangement they put together from your funeral.  

You are my hero, my example, in all your forms.

I miss you. I love you.

Love,
Mama

15 Halloweens... 

"And so you haunt me. Always with me, you are the invisible diner at our table, the constant presence that trails me as I go about my daily routine.... In the darkness of a closed-lidded world, you are alive and vital, unchanging, mine. You are the ghost of everything that once was lovely... a shadow casts its majesty over everything that remains..."

~Samantha Bruce-Benjamin

Blustery Day

Dear Aaron,

It's cold and dark. 

Remember Winnie the Pooh's blustery day? That's what it was like last night. When I went to the cemetery tonight to gather your things, most of your butterflies were tattered. I think two of the ten still had both wings, and some didn't have any. I guess that's okay. I mean, you were pretty tattered too by the time you left. Your heart and lungs hung on as long as they could. 

And somehow, the wind last night, the rain today, well, it felt lonely.

On Sunday, someone came up to me at church and said they'd been thinking about you all day. I didn't even know what to say. I teared up. In so many ways, the world has moved on without you. I sometimes wonder if you're remembered. It hurts to think of you forgotten. 

And then this morning I found myself talking to you, very much like you were still here. It wasn't anything monumental or important.  "You know, Aaron, that's not the way it's supposed to go." And then I realized what I had said. I chuckled, and then smiled wistfully, and then cried. 

October was often a difficult month for you. You spent a lot of it in the hospital, often pretty sick. Fourteen years ago we were preparing for your g-tube surgery, not realizing it would be followed a few days later by trach surgery. You had an nj-tube (through your nose, down past your stomach, and into your intestines) at the time, and when it got pulled out, we had to go up to Primary's to get it reinserted. Placing your ng-tube into your stomach was easy-peasy. But when we learned you were aspirating, it had to be pushed further and that had to be done with imaging to make sure it was in the right spot. 

Primary's ER was amazing and quickly got it done. Mary was singing a solo in the choir concert and I begged them to see if it could be expedited because your older kids missed out on having me at so many activities; she needed me there. They did, we hurried home, and were there before she went on. And then, we also ended up in the ER because you were struggling to breathe right. Sigh...  The good part was, we came home again without having to be admitted. But that was an intense day. 

Two years ago was your last surgery. Your lungs and heart struggling, we'd decided no more surgeries and then found you had a fistula in your right groin. Your artery above the hole was about four times the size of what it was below, and that stressed your heart even more. The risk/benefit scale slightly tipped in favor of surgery, so with my own heart in my throat and many prayers and faith, you went into the OR. I was terrified, but you pulled through and immediately after surgery your right foot felt warmer and was pinker than it had been in years. However, it did take you 48 hours to discharge from that "same day surgery." 

Aaron, it's been a rough week, a hard week. I feel like the train is starting to race out of control again. Halloween is in two days, then Thanksgiving, and then . . . just before Christmas, your angelversary. It's almost here and I can't quite wrap my head around it. 

How can it be a year already?  How is it only a year?? And how do I do this?????

Tonight is the last night I pick up things from your spot for several months. Between April and October, every Tuesday night I've taken down your lights and butterflies so they could mow. Every Tuesday an alarm went off at 6:30 and then again at 8 to remind me. I will still go by every night to check on you. Does that seem weird? I mean, it's not like you're going anywhere. But I can't tuck you in, snuggle you, turn on Scout for you, so I do this. 

I miss you, Aaron.

Miss you so, so much. 

Are you close by?

Love,
Mama

“The clouds wept when my heart sang a song of sorrow.”

- Sonya Watson 

Ten Months; Hard Things

Dear Aaron,

Ten months ago, almost to the minute, I kissed you good night, tucked you in (sorta, you were running a fever again) and told you I loved you.

You had listened and even responded to Daddy when I called him and held the phone to your ear while he told you he loved you.

Neither of us dreamed that the end was so near...

Baby, I miss you so much!!

Saturday I went upstairs thinking I ought to take the batteries out of your various toys. I don't want them to leak battery acid and ruin them. I turned on Scout and listened to him say, "Hi, Aaron!" and then quickly turned him off. But in moving a couple things, I bumped your musical hedgehog and it started playing music. That melody has haunted me since. I have been closer to tears, and cried, more frequently since Saturday than I have in a long time. And the batteries are still where they were. 

I feel stuck.

Or torn in two.

Part of me moves forward. I mean, time moves on, the seasons change, and there is growth. There are a lot of things I can now do that I couldn't before; a freedom that frankly I didn't (and don't) want.

And part of me is still stuck in the PICU room at midnight on December 23rd, watching your heart rate slow, the wave pattern turn sluggish and shallow, your breathing cease. 

A year ago today I wrote about my frustration at being in the hospital. Part of me wishes I'd known what 2024 would bring. A bigger part is glad I had no idea. And every bit of me is grateful for the care you received there; not just the medical care, but the personal love and concern that was shown to you. 

You touched hearts and lives of those who knew you there as well as in other settings. You were more than just a job to them. You made them smile, inspired many to search for possible treatments, taught them that life could be really good, even when it was hard.

And I guess that needs to be my take away, too. 

I never could have imagined how hard this would be, but it is still good, even when it rips at my soul.

I can do hard things. I kinda have to. And I had an incredible example and teacher in you.

I miss you.

I love you.

Love,
Mama

“So it’s true when all is said and done, grief is the price we pay for love."

E.A. Bucchianeri 

Absence Doesn't End

Dear Aaron,

I saw something today that really resonated with me.

Death is a singular event, a one time thing. Absence goes on. 

When you died (okay, that still seems so hard to say!), the world did stop and mourn with us. 

But you didn't die again, that had happened. So the world started up again and moved on. 

But you were still gone.

And you are still gone. Now it's absence. 

You left me on December 23rd and I have woke up 301 days since then without you, and I will again and again and again. To days and weeks and months and even years without you, times that you are not part of. Your absence stays. It's the hole in my heart, the silence in the house.

Your stone is so beautiful, so perfect. I saw it tonight, lit up in the lengthening shadows. I could not ask for anything better for your spot. But it is still a poor substitute for you. Your smile is brilliant but static. There is no laughter. And granite is cold and hard, unyielding. 

Yesterday Jeremy came to see you in heaven. I woke to his mother trying to find words to describe the impossible, unthinkable. I'll always remember the two of you at Heather's daughter's wedding reception. She was nurse to both of you and you guys knew she loved you, but honestly, who didn't? You are both warriors and we are so blessed to have had you. And now Bambie has joined this awful, horrible club that no one ever wants to be part of. He was 11 months younger than you, and lived almost 10 months after you moved on. And her mornings of waking without him have just begun. 

Oh, Aaron, I miss you so much! Each morning starts without you, and each day ends without you. Coming home from work, especially on Fridays, is so hard. But I'll keep doing it. Because somehow, even without you here, the world keeps turning. 

And it's better for you having been here.

I love you, my son.

Love,
Mama

“The heart will break, but broken live on.”

- Lord Byron 

Deborah's Birthday and the Wave of Light

Dear Aaron,

It's Deborah's birthday today. Another one you're missing. We celebrated her and Avanlee and Linnaea on Sunday, but today is the "real" day.

She was such an incredible support when we were waiting for you, and then again after, through the years. She was the first to learn how to change your trach and bag you and give you your meds. She ran the other kids around and kept tabs on them when you and I took our "vacations" to the Hotel on the Hill.

She now has her own children and is such an amazing mother. I think I was pretty much still a child myself when she was born, only 22. You two are my bookends, surrounding the others and teaching all of us. 

Today is also the Wave of Light where everyone lights a candle from 7-8 pm creating a wave of light across the world in memory of children gone too soon,

I've done this for 14 years now, but never in your memory. When I tried to take a picture of your candles, my phone just started snapping them. It recognized your smile. What a wonderful smile you have.

I miss you, Aaron. 

I love you so much.  

I do wish you were still here, but much more for me than for you. I keep remembering your last almost two years and how hard those were for you. Toys we got for Christmas 2021 because you played so much with them at school were largely left untouched.

I watched as a client today manipulated some of them the way you did initially, but not after February 2022. You didn't have the strength, or the energy. What a warrior. Thank you for continuing to endure. 

I'm trying to as well. You kept smiling, kept trying. I guess I do too.

Love,

Mama

“Not all siblings walk hand in hand, for some are in heaven while others walk on land.”

 — Unknown

Wave of Light

Dear Aaron,

It's October.

October 15th is the Wave of Light where we light a candle from 7-8 pm in our own time zone and create a wave of light around the world in memory of our babies who are not here anymore.

I think I've done it every year I could since you were born. (Sometimes we were in the hospital and they kinda frowned on open flames there.) I light a candle in memory of friends and family whose little ones play in heaven. 

And this year . . . . this year I will do it for you. 

Your light still burns bright, much brighter than a candle, but the candle reminds me of you.

Tonight I also "lit" my battery candles. It's funny how during the summer I don't really "need" them. The batteries run down about the time that it gets light again and I just leave them alone.

But now that it's dark earlier, and seems so much darker even later, I need the light. So Linnaea helped me change all the batteries. There's a LOT! 

And now the dark corners in the house have light. The bookshelves in the living area, the hutch in the dining room...

And the curio cabinet with your hand molds, your pictures, your butterflies and your bunny. 

They flicker and cast a warm glow and remind me that hope lives.

And you live, just not where I can currently see you. 

I want to sing in the Christmas choir this year. Practices start tonight. I haven't been before the pandemic, and you were there at my last performance. Will you hang out with me? I don't really want to do this on my own. The past several years I did it, one or another of your siblings sang, too. In fact, I think someone has every year since Deborah turned 16 some 17 years ago. But now, it's just me . . .  and maybe you? 

I'm kinda nervous, Aaron. I haven't sung since you died, not really. I mean, I can usually sing the hymns at church (but not always) but otherwise, I haven't. It took me many months after you were born to be able to sing to you without crying, and now I wonder if I can do this. Help me? 

Christmas music has always been a light to my soul, pretty much like you. 

As I look at the candles, I remember you, your strength, your tenacity, your joyful spirit. 

Love you, kiddo.

I'm still trying.

Be close?

Love,
Mama

Now is the flickering flame of a single candle

Forever—the endless light of a galaxy of stars.

~Terri Guillemets