You and Matthew

Dear Aaron,

Yesterday was Matthew's birthday. The two of you played and laughed together so much. Now he's in Wisconsin and you're in Heaven. You wear one of the shirts he gave you in the picture on your gravestone, in your funeral program, and in my Facebook profile picture. 

But you two are a pair! The smiles and laughter you both freely give. I can't wait to see the shenanigans you guys pull off on those golden streets. 

Days are getting shorter now. The sun isn't quite up yet when I get up, and it sets sooner too. School starts in three weeks for Alpine School District. I should be expecting a phone call in a couple weeks telling me who your bus driver is and what time you'll be picked up and dropped off. After you left, I would sometimes see your bus driver coming up the road if I left at the right (or wrong?) time. 

Joseph and Sarah get here tomorrow and Michael speaks on Sunday. Empty nest day is coming closer and closer. 

And I got a bill this week for some of your medication; a bill I spent hours on the phone clearing up a year ago, and then again in January. They tell me it's "taken care of now" but I have heard that before. In January, the representative told me she would do a "one time courtesy credit, but only one time". I had already told you had passed, so I informed her that since you were dead, it was not likely that I would be asking for it again. But I guess she never actually put it in, so I got the bill. It's frustrating.

Anyway, there has been good news, too. Things that I don't want to share because it's too private, too sacred. So I cling to that. It simultaneously comforts me and breaks my heart. 

I love you, Aaron. I am so grateful for you. It's hard to believe it's been seven months since I held you, since your heart stopped, and somehow, inexplicably, mine kept going. 

I miss you.

Love, 
Mama 

"Smile ... it makes people wonder what you're up to."

- Jill Shalvis

Daddy's Birthday

Hey kiddo,

It's Daddy's birthday. 

It's kinda a quiet one. He worked, I worked, Andrew worked, and Michael did some, too. Mary came by and your siblings have called.

Have you been hanging around? How are you? Do you miss us, too?

It seems so strange that the world just keeps turning, life is moving on. Your niece and nephews are getting bigger it seems every time I see them. 

It's been seven months tomorrow, seven months and so many more to go. 

I've been feeling numb lately, and tired, almost like I'm just marking time and going through the motions of living. I guess that's normal, whatever normal is. 

I do love the picture we chose for your headstone: that cheeky smile with the shirt that says, "Smile, it makes people wonder what you're up to." I see that and smile through the tears. 

Someone close related an experience while in the hospital and very ill. They spoke of family members coming to them through the dark fog and hugging them, loving them, and reminding them why they wanted to come back. 

Did that happen to you? Did you feel us loving you, praying for you? Did you feel me holding your hand all those times we sedated you to give your body a fighting chance? Did you hear me saying I needed you to fight? 

And was it your soul speaking to me that last time telling mine that it was time to let go? That was the one time I didn't ask you to stay. And when I finally gave permission to the team to not try to restart your heart if it stopped. 

And less than three hours later, it did. 

I miss you, Aaron. Miss you so much.

Love you, little man,
Mama

“One of the greatest titles in the world is parent,
and one of the biggest blessings in the world is to be one.”

— Jim DeMint

Today is Heavy

Dear Aaron,

Today just feels heavy.

I don't know if it's just because... Well, you know, grief. 

Or because it's 30 weeks tonight into tomorrow.

Or because I'm worried about some family members.

Or it's that tomorrow we go to the temple with Michael which really seems to emphasize that we're empty nesters long before I thought we would be. 

I mean, really, I knew that to get to this milestone, you would be gone, but I didn't plan for that. I didn't want it. I still don't. 

I guess if people read the blog, they probably think I'm generally in pretty rough shape. 

I'm not, it's just that when I am, I write. I write to you, 'cause I miss you. I spent nearly every single day of your life with you. And over the last year, it was also almost every single night as well. I talked to you every day. I did your cares, I changed your diapers, pulled meds, gave food, laughed, and wrestled you. Held your hand for IVs, art lines, echos (okay, those I held your body too) and so many more procedures. You counted on me to keep you safe, and I tried, I tried so hard. 

We were intimately involved in each other's life.

For the past 14 years, I haven't been able to wear my hair down at home. It's funny, 'cause I can if I'm not at home, but the minute I walk through the door, it has to go up. I totally blame that on you. You loved to grab my hair, my glasses, anything within your reach. You wanted to connect, and so did I (just not with my hair). 

And now, connecting seems so much harder. 

Tomorrow I'll be in the temple, in the celestial room, where I sat with you last summer. Will you be there? I think you will be. I hope you will be. 

Are you watching over us?

I miss you.

Love, 
Mama

“Without you in my arms, I feel an emptiness in my soul.
I find myself searching the crowds for your face –
I know it’s an impossibility, but I cannot help myself.”

― Nicholas Sparks 

Thanks for Being There

Dear Aaron,

Thanks for keeping me company.

I have never felt your presence before. Others tell me they have. I have hoped that you've been close by, but that's all it has been: a hope. 

Tonight, coming home from dropping things off at Mary's, I could feel you. I could almost see you, sitting next to me in the passenger seat.

You were bigger, the size of a typical 14 year old, but it was you. I felt like I could almost reach out and hold your hand. 

And that's all I wanted to do. I did reach out, and could almost feel your hand in mine, holding me, loving me. 

Now I'm sitting on the patio, crickets are chirping, the hummingbird zips over to the feeder and back to the copse of scrub oak just behind the fence, and then back again for more nectar. A dragonfly swoops and glides, and the sun is low enough to cast shade over most of the yard, bringing cooler temperatures, just right for being outside. 

I miss you, Aaron, but my soul knows you're at peace. No more tubes, no more wires (although you always did think those were toys). No more sedation, fevers, cranky brain spells. 

I remember your last smile, so full of mischief and love as you looked around the very full PICU room ten days before you left us. 

It's been almost seven months now; 30 weeks this weekend, over half the year since you left. I'm learning to move with the grief. I don't think you ever really move "through" it; that would imply an end. But as I sit here, I feel a measure of peace, of comfort. It's quiet, and your hummingbird just flew close, as if to say "hi." 

Hi, my little boy, maybe my-not-quite-as-little boy. You're amazing. So glad I am your mom.

Love,
Mama

“Things we lose have a way of coming back to us in the end,
if not always in the way we expect.”

J. K. Rowling

Return With Honor

One year ago today.

Dear Aaron,

This popped up in my memories today. 

A year ago Andrew came home. (And a year ago tomorrow Joseph and Sarah were married; it was kinda a busy time). 

We made signs, fun signs (Like "Ladies, look who's home!" and "Uncle Andrew, we missed you this much! with wide spread hands). 

And this one we perched on your chair because it just seemed like a good place to stash it. 

Somehow, while there were some tears, and lots of smiles, it was in greeting you that your siblings broke down. 

Each left knowing that while they were gone, you might also leave. Each went anyway, knowing that helping others learn about Christ and families and joy was important.  

Andrew and his mission president were actually the only ones I ever called to say, "I don't know if he will make it." And that happened twice. 

Twice I had to tell your brother that you might not be here, and yet you were. You did it. You pulled through. I never did have to call a mission home, or a missionary to tell them you were gone. I asked you to never make me do that. Of course, I also asked you for 13 more years as well, 13 more, not 13 total. 

Thank you. 

And then, just before Christmas, you had your own "Homecoming." You returned with honor. You fought the fight, you finished your course, you kept the faith.

Now it's up to me to keep going, keep running. Have I mentioned how I hate running? But no matter, I will, 'cause I know the prize is worth it.

I love you, little man.

Love, 
Mama

"The journey of high honor lies not in smooth ways."

Philip Sidney

Michael's Birthday

Dear Aaron,

It's your Michael's birthday. He's 18 today. That seems so weird. 

I remember 33 years ago tearfully asking a family member if they would take our children if something happened to us before kids were grown. I was expecting your oldest sister, and the thought of not being here, but also leaving you guys without plans, was so hard. 

And now, now it no longer matters. 

I did worry about what would happen if you somehow outlived me, but figured it wouldn't be an issue. And I was right. 

But your Michael... 

You guys really did grow up together. He wasn't even four when you were born. He loved playing with you, reading to you, zooming you around in your stander or wheelchair. You loved to tease him. And frankly, much of the time he didn't even realize you were handicapped.

In fact, at one point, he was looking through his own baby pictures and asked how it was that we hid his tubes and wires, 'cause you know, that's what babies have. 

He carries you with him still, and I think you carry him as well. He wears your initial around his neck, and when he can't do that due to missionary rules, he's already got four different tie bars with your initial on them.  

And I'm sure you'll be right there with him on his mission over the next two years.

He's such an incredible young man, all you kids are awesome. I don't know how I managed to be so blessed to be called your mother. 

I wouldn't trade it for the world.

Love, 
Mama 

A brother is a friend given by nature.

~Jean-Baptiste Legouvé

Here. And Gone

Dear Aaron

I’m sitting here, heartbroken, next to you. 

29 weeks, twenty-nine.

And today I opened Facebook briefly before leaving work.

Rebekah is gone. But you probably met her at heaven’s gate. 

Rebekah is the reason so many of us found support, guidance, friendship. She was just a little more than a year older than you. When she was born, her mom couldn’t find any real support, no networks, no communities, so she set up really the first Trisomy Facebook group. And I found it. Many others did, too. Almost 5000 of us…

All because Susan was willing to reach out and share Rebekah.

And Rebekah was one that I really thought would live, well, (almost) forever. 

In fact, she was supposed to go home today, home to her family, not Home to Heaven. 

For the first time in a long time, I wept all the way home from work.

You know, Aunt Liz reminded me of what I said when you were born, and again when you left.

Both times I called and didn’t even greet her. 

On June 13, 2010, I said, “He’s here!”

And on December 23rd, it was simply, “He’s gone.”

Here.

Gone.

Never forgotten.

Oh, baby, I love you.

I miss you.

Love, 

Mama

Fly, fly little wing

Fly beyond imagining

The softest cloud, the whitest dove

Upon the wind of Heaven's love

“Fly” – Celine Dion 

I Wasn't Ready...

Dear Aaron, 

I stopped by to see you tonight and sat with you for a bit. A little white butterfly fluttered in and about the headstones. It came by a couple of times, just flitting nearby. 

Was it you brushing by to say hi? 

A cousin's daughter is really sick. I only met her daughter once and that was over 10 years ago, but my heart breaks for the grown up little girl I remember playing with at Nana and Papa's, and at our home in Colorado. I pray for healing but it may not come in the way we hope for.

Are you close by? I'm sure Nana and Papa are pretty busy with her and with Gramma. Do the three of you wrap arms around them, and us?

You understand so well the rigors of medical treatments, and I guess, the sweet release when they're over. 

But the agony of those who stay behind...

I miss you, kiddo. 

It's so hot right now, but already I sense days are getting shorter, darker. We have many wonderful celebrations coming up: weddings (3 of your cousins), Michael's farewell, birthdays, and school starting in a month. 

But this year, for the first time since 1996, we don't have anyone catching a bus, or walking to school. No back to school nights, no first day of school pictures. 

It's strange. 

I don't think I like it.

I wasn't ready. 

I miss you,
Mama

"What we once enjoyed and deeply loved we can never lose, for all that we love deeply becomes part of us." 

–  Helen Keller

Love=Joy+Sorrow

Hey kiddo,

It's my birthday.

And I heard from eight of my nine kids. But I did stop by and see you...  

Daddy asked me what I wanted to do today. Alpine does a trucks and tunes gig in the park every Tuesday in the summer. We used to go to them (back before food trucks were part of it). Do you remember? Rocking out in your chair, you loved it. We didn't make it to many, but sometimes we did.

That's what I wanted. A summer evening in the park with family, music, cool grass under my feet, children laughing, good food. And so we did. 

It was beautiful. Your big kids who live in Utah County came, and your niece and nephews too. We sat under the trees; Linnaea and Elend played on the playground and Barrett and Sterling were passed around. Barrett even took a nap on the blanket. 

Joy, mingled with sadness. Gratitude for the blessing of family, and missing you at the same time. 

Do you celebrate birthdays in heaven? Were you there and I just didn't feel you? 

Or were you the reason my soul felt peace? 

Somehow time moves on...

I miss you.

Love,
Mama

"Love is the root of all joy and sorrow."

Meister Eckhart 

Do You See the Stars?

Your Star, from Make a Wish

I looked for you tonight, outside in the stars. 

Twinkling high above, I tried to find you. 

Were you there? 

Do you see them, too?

The mountains curve around me, strong, stalwart, invincible.

I think I used to feel that way too. I don't really remember. 

Somehow, before Death came, I didn't realize how broken I could be. 

But maybe my brokenness can let the light shine through the cracks?

Maybe losing you refines me?

I have to tell you, refining fires burn, they hurt. 

But I guess you know that, don't you. More and more I'm convinced that the last 22 months of your life were more a gift to me than they were to you, giving me the chance to realize that your journey was nearly over. 

I love you kiddo,
Mom

“Only in the darkness can you see the stars.”

– Martin Luther King, Jr. 

Planning For Life, Dealing With Death

July 2011, 13 months old

Facebook reminded me of previous years. In 2011, I finally started believing you would live. I took 4th of July pictures. You got your first tooth. We started planning surgeries that would improve your quality of life, instead of just saving it. 

You had further hearing tests and got hearing aids (that you preferred to eat rather than wear). You had your cleft lip repaired (twice). You began serial casting to prepare for another surgery so that you would be able hopefully walk with your walker. That was not on your list of things to do. You seemed to think the purpose of that was so your brothers could zoom you around the house.

And for the next several years, July brought a slowdown to life, and an increased opportunity to just soak you in. Visits to water parks, the occasional family reunion. One year a road trip to Arizona. Summer concerts, soccer tournaments. A baseball tournament or two (I can't remember).  Fireworks and parades. Memories.

I began to take them for granted. You were just here, part of things, loving us and laughing at us.

And now you're not.

So after that wonderful July when you were 13 months old and I started planning for life instead of waiting for death, this July I'm working to figure out how to live without you.

You know, it's hard, so excruciatingly hard.  Honestly, I don't know how to do it yet. I mean, I'm moving through things. I show up. I'm so grateful to be your mom, and I wouldn't trade it for anything, even for not having this pain. 

It's still a physical ache in my lungs, my heart.  But you were, and are worth it.

Oh baby, I miss you.

Love,
Mama

“It is now, in this world, that we must live.” 

– Andre Gide 

Grief...

Dear Aaron,

Grief is messy.
And confusing.
And exhausting.
And hard.
And stupid.

Except, grief also means

Love.
You.
Joy.
Heartache.
Missing you.
Grateful you were part of my life.
And grateful you are still part of me, of our family.

All the lessons you taught me.

Laughter.

Resilience.
Perseverance.
Compassion.
Empathy.

So...

I don't know.

I know that I've been confused and less aware lately. Daddy asked me to bring home chips the other day. I asked what kind (you know I prefer tortilla chips). He said "potato." I brought home Doritos, and it didn't even register that they weren't potato chips until a few hours later. Don't worry, I did actually manage to grab potato chips today.

Simba has never escaped on me. Not out the garage, not out the front door, and not out the back before we had a fence. Guess what... Yeah. This morning I opened the front door to water the plants on the porch and he did. And so did Sophie. She came right back. He enjoyed a jaunt through who knows where for about two hours. 

Yeah... 

I wrote earlier about wondering if perhaps this was all just a very long, very bad dream. (It's not.) A few days ago I wondered if you had been a very long, hard but wonderful dream. If our lives with you were not quite real. I'm grateful to know that is also not correct. But briefly, that's where my mind went. 

Sometimes it seems surreal, all those cares, hospital stays, people I interacted with so closely and now haven't seen for several months. 

It's hard.

I miss you.

Love,
Mama

"Pain is the great teacher of mankind. Beneath its breath souls develop."

~Marie Dubsky  

Home

Dear Aaron,

It's been a busy week.

And to be honest, I've also been trying to distract myself.

It's hard living without you, hard living with the knowledge that you won't be coming back to me in this life. 

So this week, I've tried to ignore it.

But still, it's there, underlying everything. 

You're the reason Lucy's death tore me up. You're the reason we were at Dream Nights at the zoo. You're  the "why" I chose to go back to school, chose social work, and chose to work where I do.  And you are the reason I know, or at least am learning, to let others make choices. 

This week I scheduled Michael's first time to go to the temple, and I didn't even think to ask him which temple. I just chose the one down the road from us, 'cause that makes sense. But when I let him know (notice I didn't ask here either, I just informed him), he retorted that he should have some say and I probably scheduled the wrong temple. Wrong temple?? How can a temple be "wrong?" Except I did, and it was. 

Last summer we went to the Saratoga Springs temple open house. The Spirit whispered to me that this was my only chance to be in a Celestial Room with you. It was also the last time Michael took a picture with you outside of the hospital. Yeah, I scheduled the wrong temple. So then I fixed it. And I told a colleague that apparently, even with my training, I forget to allow some people (my kids??) to direct their own lives. I guess I'm still learning, right? 

Anyway, I've been pondering a bunch of things this week. I'm glad playlists don't get "worn out" 'cause mine has pretty much been on repeat for about six months now. There's a lot of songs about home and hope and gentle melodies. I still don't have a grasp on this; the ideas are still pretty nebulous, but I'll try to explain the thoughts that go through my mind. 

We often talk about you going Home, and home, either here or in heaven, is a goal. Most Fridays I'm the last one out of the clinic. It's generally a slow day anyway, and most are off early. I love my job, really! But my last client doesn't come until 5.  I can love my job and be ready to be done by Friday evening. Sometimes I'm a little envious of colleagues who leave earlier on Fridays and get to go home, but I still have work to do. 

You finished your work and went Home, and I miss you. You went Home. Someday I'll come too. But for now, I still have work to do here. Does that all make sense? As humans, we need things to make sense; stories are attractive because they have a beginning, a middle and an end. And I am still trying to figure this all out. It still doesn't make sense in my mind that a child goes Home before a parent, but I guess that's the difference between fiction and reality. This is reality, and it doesn't always make sense. 

Right now, sitting outside in the cool of the morning, I hear crickets chirping, birds calling, Simba's tags rattle as he shakes his head, Sophie's toenails scratch on the patio, and I miss you. Dew drops cling to blades of grass untouched by the rising sun, the green leaves form a border under a clear blue sky, and the hummingbird just zipped back to its nest from the feeder. It's beautiful out here, peaceful.

Your stone is now in place. I drove by after work on Monday and it greeted me, your smiling face, the grin that lit up my world and is now only in pictures and video. 

June 29, 2010

Fourteen years ago today we brought you home from the hospital for the first time. They sent you home to die. I knew it, and I actually welcomed it. Having you home was such a blessing. I could be with you all the time, not just for a couple hours a day. And I was desperate to make memories here with you before you left us. What an abundance of memories, of blessings, waited for us. It wasn't just a few days or weeks. We got just over 13 1/2 years of memories together. Your big kids made a sign for the yard. 

Were there people as anxious for you on the other side as well? Was there a big sign? A party? You did it, my son. You finished your work here. You went Home. I am so glad for you, and yet, this world seems lonelier, darker somehow, and I miss you. 

Love,
Mama

buried with love and starshine—

a grave ever glowing with memories

~Terri Guillemets

6 Months, Half the Year, and Another Angel

Leaving without you six months ago

Dear Aaron,

It's been six months since you left. 

Six months with no alarms, feedings, medications, hospital stays or doctor visits. 

Six months where I can't see you, see your smile.

How are you? Are you loving heaven?

Were you there when Lucy danced through heaven's gates Friday night? Did her face light up when she saw all her friends? Did you all pause and miss us down here? 

You know, Lucy was my step back into the PICU. I went to see her and her mom a few months ago when they were there. And now, almost exactly six months after you left, she did too.  I'm shattered, but I know it's nothing like Melinda is feeling. I feel helpless, and again, I know it can't compare to her pain. When our children leave us, children that we have poured not only our heart and soul into ('cause we do that with all our kids) but whose welfare consumes our every waking and sleeping moment, it leaves a gigantic black hole that seems to suck everything else inside. 

I don't actually remember not knowing Melinda and Lucy. I mean, I know there was a time because Lucy is younger than you, but still... It seems we were always friends. Maybe because you and Lucy have been friends since before time? Help her find her way around, okay? And both of you be close to us, too, please?

Last night I finger painted a scene that's been on my mind for a long, long time. I actually worked through it in my last training session 'cause you know since we have to practice and we only have each other, we each get to play the part of client as well as therapist. 

So many, many, many times we needed help transporting so we called an ambulance. Most of the time you were relatively stable, except I never did figure out how to bag you as well as drive. But a few times, you weren't, and we went lights and sirens. One time, I remember seeing those lights revolving off the jersey barriers on the freeway as we sped through the dark night, racing to get you to a higher level of care than I or the paramedics could provide. That was one of the few times I was also scared. It settled in me and it got to where the last few months, I couldn't hear sirens without breaking down. Thanks to an amazing therapist and hard work, that hasn't been a problem the past couple weeks, and yes, it's summer, I'm hearing them.  

So last night, I painted the final image. It's the lights through the window but superimposed are the words, "I am enough." 

And I am.

So are you.

We have to be.

Six months, and so many more to go...

Love,
Mama

“Grief is the price we pay for love. Every mother dreads that cost.”  

Sarah Sands

Summer Solstice Seems Dark

Dear Aaron,

I don't know what it is, but today is hard! 

I cried before work today, first time in a long time. 

I cried on the way home. One minute I was fine, and the next, well, not so much.

I sobbed at the cemetery.

I just don't know. 

It's one of those times that just grips my heart, reminds me that you really are gone, at least from my sight.

When I got to your spot, it was different. Your pinwheel had been moved to the other side, the butterflies were slightly different, and your stone and flowers had been moved forward. Green spray paint marked a rectangle on the grass. 

Then I noticed the orange construction-type flag with your name ... and your death date. 

That date...

Anyway, it looks like your permanent stone will be installed soon. How soon? I don't know. Maybe tomorrow?

I keep going back to the numbers. 13 years, six months and ten days on this earth. 26 weeks tomorrow since your eyes were last open, 26 weeks on Saturday since your last heartbeat and somehow, it almost seems inexplicable, somehow mine kept going. 

And six months on Sunday. 

It's summer solstice, the longest day of the year, and it seems like an eternity since I last held you. 

I miss you so much, my son. 

I just miss you.

Love,
Mama 

“To have been loved so deeply,
even though the person who loved us is gone,

will give us some protection forever.”

J.K. Rowling 

Rough Days and Mountains

Dear Aaron,

It's been a, well, I don't know what to call it, crazy? couple of days. 

Most of the stories aren't mine to tell, but it's been rough, mentally and emotionally. I find myself using my skills and training not only to "be with" others but also for myself.  

And then there's the cars...

BOTH the Crown Vic and Andrew's car went down, within 24 hours of each other!! Who knows what happened with the Crown Vic. I guess it just wanted a tow, 'cause once it was towed, it was fine. Sigh...

Andrew's car is frankly not safe to drive, probably hasn't been but he didn't know that. So we've been playing musical cars. But tonight he found one that he really liked, and the Crown Vic seems to be behaving at the moment. And tomorrow I drop off the title for Andrew's and it will be headed to a junk yard, so there's that.

But it's been rough, hard, unsettling at the very least. 

Are you here? Have you been aware? Helping?

I think you must have been, at least it makes me feel better to think so.

And today, man, I feel like I was in the car all day. Up to Salt Lake, back home again, down to south Provo and home. Back to Salt Lake, home, and then to Orem. And then before and after dinner, two trips to David's. But the thing is, I was there, able to help Andrew and Michael, be present. And I recognize that if you were still here with us, it would have been much harder on them.

They learned to do without me so many times because you needed me. And they learned to be with you. They made sacrifices because they love you and know you were and are worth it. But I think it's also good that I can be there with them now, too. 

I went to your site to return your temporary marker and your flowers, and found that the ground above you was scalped again. Oh, it hurts. I talked to a guy that's working there and he's going to try to make some adjustments, but honestly, there needs to be dirt removed from below the grass so it's not mounded so much. 

I feel like I'm complaining a lot here; I guess I am. 

But it's not all bad. Music from my playlist soothes my soul. As Andrew and I drove home, the
mountains stood out in stark relief against the sky, with the rays of the setting sun hitting them directly, and it was so beautiful that it took my breath away. 

We live in such a beautiful world. I love the strength of the mountains, how they remind me that I can be strong, too. I won't give up. I want you to be proud of me. We will keep moving forward. 

And I know you'll be there with us.

Love,
Mama

I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh from the Lord, which made heaven and earth.

Psalm 121:1-2

Father's Day

Dear Aaron,

It's Father's Day today. 

You have the best daddy. I did the medical, and he did the love.

You loved snuggling on his shoulder, reading books together, hanging out and watching Peter Rabbit over and over and over again. 

He held down the fort here, taking care of things, while you and I would disappear at a moment's notice to your "vacation home."

He misses you, too. He tries to be strong for me, but I know he hurts too.

Send him some love today? And tomorrow?

Today might be mostly okay. I mean, we've got church and then chaos here tonight as everyone (minus you, Matthew and Kensey) will be here. 

But tonight? Tomorrow?

Stay close, okay?

Love you so much!

Love,
Mama

“One of the greatest titles in the world is parent, and one of the biggest blessings in the world is to be one.”

— Jim DeMint

 

Waffles and 25 Weeks

Elend saw this and said, "Baby!" Linnaea piped
up and said, "That's our Uncle Aaron!"

It started with wanting waffles this morning.

But I wasn't home; I had to go pick up something from Home Depot. And then when I got home, the kids (okay, mostly adult kids) were on their way out the door to meet up with Jonny & Avanlee's family to play disc golf. So I offered to do waffles when they got home and texed Jonny & Avanlee about it.  Then Linnaea came upstairs to see me, so I invited her family.  David called; I told him. I called Mary.

Deborah, Bronson, Linnaea and Barrett. Mary. David.  Jonny, Avanlee, Elend and Sterling. Joseph and Sarah. Andrew. Michael. (Matthew and Kensey are in Wisconsin and moving into their new apartment.) And you... 

Were you here, too? I saw a butterfly on your birthday, and the hummingbirds this morning. 

Underneath all of this, I'm missing you so bad!! Those gentle waves from Thursday are building strength, harder, faster, pushing me over.

Friday night into Saturday again...

On my way home last night, I wondered if it was possible this is a very bad, very long dream. (It's not.) Maybe you were waiting at home and I needed to hurry to sign Holli out. (You weren't, I didn't.) 

Honestly, I did know that, but for a brief moment, I wondered, and I hoped, and it knocked me down all over again. 

This morning I didn't even want to move. Last night, I didn't want to sleep. 

And then by noon, I was busy, making multiple batches of waffle batter, scrambling a couple dozen eggs. The noise level was pretty intense with lots of laughter and exclamations, punctuated by squeals from Elend and Linnaea and cries and coos from Barrett and Sterling.

It's relatively quiet again, and the waves have settled a little. They're still somewhat intense; still more than they were on your birthday.

It's been 25 weeks. 25 weeks! And while the sun is shining, it feels kinda dark here. 

Facebook is full of the memories, pictures, even some videos. Most years it took me a few days to post, which means this next week will be full. I cherish them, and am devastated that there will be no more.

We're working our way through the Harry Potter movies. In speaking to Harry about his parents, Sirius reminded him that those we love never really leave us.

Are you still here? Do you miss me, too? 

Love you so much,
Mama

"But know this; the ones that love us never really leave us."

J.K. Rowling

The Boy Who Lived (And Lives)

Dear Aaron,

It's your birthday! Happy Birthday, Little Man!

Oh, I miss you. I can only imagine the celebration you're having. I mean, one of the main goals of earth life is to gain a body, and you did! You did in a marvelous way. Some may think that's a strange thing to say.  After all, while no one's body is perfect, yours had some significant challenges, challenges that made it so even the basics of life needed support.

And yet, your marvelous, perfect spirit was able to shine because of those limitations. 

You showed us how to truly live and love. And I am so grateful.

Today (at least at the moment) the waves of grief are relatively gentle. The lap at my feet, my toes, sometimes splashing higher, but for now, not overwhelming. 

We are being carried, I know we are. Yesterday afternoon, a neighbor came by for a visit. Last night Holli came by as did my sister and a niece. This morning early, a sweet friend left flowers on the porch. And I know so many others are praying for us.

I suspect you are, too. I think you're probably close. Please stay close, wrap us in your love. 

What a blessing it is to be your mother, to know you, to know that you still live, just not here with us. That part will always sting, but I guess it's through pain that growth comes. 

My valiant warrior, my hero, my boy who lived...

I love you. 

Happy Birthday.

Love,
Mama

A trip through 14 years of birthdays.

Goodbye may seem forever,
Farewell is like the end,
But in my heart's a Memory,
And there you'll Always be.

 

I Feel Lost

Dear Aaron,

I just don't even know right now...

I feel lost. 

I keep thinking about how 14 years ago tomorrow I went into labor with you, but you didn't show up until the day after.

I was so afraid, afraid you wouldn't make it.

And to be honest, afraid you would. 

I didn't know how to "do" special needs.

But it turns out, I actually did.

Love.

That's how you do it.

You love.

And I guess that's how I go forward right now, except mingled with that love is pain. 

It's very different than the pain of the c-section. I mean, that was bad, but there were pain killers and so on. There aren't any for this. I just have to feel it, to let it in, and let it out.

It's clean-up week at the cemetery. They leave things up for two weeks after Memorial Day, but then the next week anything that is not permanently attached is removed and discarded. I went on Saturday to make sure I didn't get distracted and forget on Sunday, so your decorations, your temporary stone, are all in the garage.

And your place looks bare, forlorn. I can't even put anything up for your birthday. 

So I guess we'll do what we do for everyone, and "celebrate" on the weekend. Friday night I'll put out the balloons I bought for you. 

You know, two years ago I had the distinct impression that it might be your last birthday with us. It wasn't, but it was the last time we got to celebrate with others. Last year you were in the PICU. You had been so critical just the week before that I simply cried because you were still here. Your nurses helped me get you into your wheelchair for birthday pictures, and gratitude filled me. 

Now this year, well, like I said, I just.  don't.  know.  how.

Love you so much, Aaron.

Miss you so much too. 

Love,
Mama

“Life is full of grief, to exactly the degree we allow ourselves to love other people.”

— Orson Scott Card

Processing

Dear Aaron,

There's so much in that word.

Processing...

I'm training in EMDR this weekend, the second half, and it's pretty intense. 

Most things related to your life bring smiles, and then tears because you're gone. (I still struggle to realize your smile and laughter won't ever be seen again in this world.) But most feelings are okay, even good.

However, there are some sights and sounds that can really set me off.

Most people would think that Lifeflight would be one, or maybe vent or pulse/ox alarms. Both your Lifeflights were okay for me. We got you into a good spot before leaving and they were smooth. And the stupid alarms, well, exposure to them was waaaay overdone. I mean, they were part of the background noise. Most ambulance rides were, too.

Most...

But there were some, a few, where we went lights and sirens. Those were the ones where I put off calling, or didn't realize earlier that you were in trouble. And since you passed, sirens have been very triggering. In the moment, I didn't have time to stop and think about it. I mean, I was bagging, we were pushing meds, we were working to keep you stable, or stable-ish. 

But more and more, sirens have been hard.

So today, because we have to practice in training, and we only have each other to practice on, I figured I'd take advantage and get some free therapy.

Oh, boy...

There were a lot of feelings that came up. It was hard work! 

But Aaron, it worked! I got to where the image of those lights rotating on the jersey barriers, the memory of the sirens, well, they're okay. 

I know you loved me, and love me, and trust me. And the paramedics and me and you, we made a good team. 

And I did what I could with the knowledge and skills and tools I had. 

And I am enough.

I am enough.

So are you.

But still, I miss you. I guess that's okay. 

'Cause I love you.

Love, 
Mama

"Live every moment, laugh every day ... love beyond words" 

Part of You is Still Here

Dear Aaron,

Six more days. Six more days until your birthday? Do you have a big party planned? Is Grandpa Bear there? Nana and Papa? My Grandma and Grandpa? You knew Grandpa Bear here, but not the rest, but somehow I can't imagine you and Papa not being super close. I mean, you share middle names, you're both amazing people, strong, courageous, and oh so full of love.

Oh baby, I miss you so much. 

Today the mail brought tears, both of pain and of love. 

Aunt Liz sent me a beautiful pot with spring bulbs just getting ready to bloom, along with her love especially over this next week.

And the Utah State Government sent a reminder that it's time to renew your handicap placard.  Somehow I don't think you need that anymore. The last ones currently sit in the closet upstairs, with all the rest of your things. 

I remember when I first went to get that. It seemed a little funny to me. I mean, what one month old is  capable of walking 200 yards (or whatever the requirement is)? And obviously that's not why you qualified; you needed oxygen to breathe. At the time though, you used these little cute tiny tanks. It wasn't a big deal, but I figured that way if I needed it, I'd have it for you. And if not, I just wouldn't use it.

Then not even three months later, you acquired a bunch more accessories: a trach and a vent to go along with your oxygen, the suction machine, a pulse/ox, your g-tube and feeding pump, and of course all the back-up emergency supplies as well. Then the wheelchair... 

Now, I carry you in my heart. I use your lunch bag each day for my own lunch at work. A crystal angel hangs from my rear view mirror, a butterfly on the back window, and all my little emotion stuffies sit below the dash, reminding me to lean in and feel all the feels. Many of the name tags from the PICU are on the inside of my closet door. Your hospital gown on the chair in my room; your bib that says "Hope" on my shelf. Gentle reminders of you. I try. Sometimes the pain is overwhelming. Sometimes I feel peace. Always there's a sense of something missing.

Your season paintings still hang in one office while a butterfly wind chime hangs in the other. I think,  it's fitting. I mean, afterall, you brought me to the field. You taught me to meet people where they are, to help them help themselves, to want to listen, lean in, and just be there. You taught me that even in the pain, joy can be found. Even when it's hard, I can take another breath. 

I'm sitting in the hammock in the backyard, thunder rumbles in the distance, and the hummingbirds zip in and out drinking from their feeder. I hear birds and feel the grass on my feet. I'm trying, Aaron, I really am. And I think most of the time, I do okay.

Sometimes I break down, and I suspect that may last until I hold you again in my arms. I keep talking to you in my mind, often while driving. The other day I woke up with dream fragments running through my head. They were fractured enough that I could not grasp them, but it felt happy, calm, peaceful. Were you there? Did you come say, "hi"? 

Miss you kiddo. Love you so, so much.

Love,
Mama

“I know you’re gone but… 

You’re still here, everywhere…”

– Debbie S.

Ten Days Until Your Birthday

Those we love don't go away
They walk beside us every day.
Unseen, unheard, but always near..
Still loved, sill missed, and very dear. 

Dear Aaron,

Ten more days, ten...

Facebook reminds me of old updates, blog posts, and I am grateful. 

But sometimes they make me long for my innocence.

In 2020, four years ago today, I wrote 10 until 10. It was ten days until you were ten years old. I had no idea what was on the horizon. You were healthy, happy, having a great time, learning, growing, teasing...  

It can be seen if you click on the blog title link above. There's even a fun video of the many funny faces you made.

You know, you were a lot like most almost ten year olds.

But most 14 year olds are not gone. Most celebrate with loud noises, friends, lots of sugar, maybe pizza, anyway lots of food 'cause you know, they're 14. 

But you're forever 13 1/2. 

And I find myself crying a whole lot more than I have for a long time. 

A friend sent me a sweet sign and I've put it in the corner garden, where I selected the flowers with you in mind.

Lavender because we would use lavender lotion on you. Pansies because they seem delicate and small but are actually pretty strong and they bring a touch of color and joy to their corner of their world.

Matthew and Kensey leave for Wisconsin tomorrow. Andrew moves out the beginning of August. Michael leaves on his mission the middle of August. And then it will just be me and Daddy. Daddy asked me what we were going to do when it was just us, and I told him that I have no idea...

"When one person is missing the whole world seems empty."

- Pat Schweibert 

I Heard You

Dear Aaron, 

I don't hear your alarms anymore. I mean, I did hear them in my sleep, or when something else would beep, for the first few weeks after you left. But it's been a long time since that happened.

Then last night, I heard you talking. Standing in the kitchen making pizza, I could hear your squeaks and vowel sounds, your almost giggles, your squeals. I paused as it caught my heart, and listened. 

Eventually I realized it was Barrett downstairs, but for those few minutes you were back, here, and my soul was comforted. 

And then it ached all over again. 

I'm still not sure how to go on without you. 

Sometimes it's fine.

Sometimes it's most definitely not.

I pause at your grave and talk to you, and listen for the whisper on the breeze. 

I find myself opening the windows of the car, catching the tweets of the birds. I wait for the whirr of the hummingbird wings on the patio, and the tones of the windchimes.

They all remind me that I am here, and that you were here, and that somewhere, you still are. 

And you will always be a part of me, and me a part of you. 

"There’s no end to my grief journey because there’s no end to my love for you."

- J.S. Golubich 

My "A" Team

Dear Aaron,

Tuesday was Andrew's birthday, your "A Team" sidekick. But true to form, Tuesday was a bit busy. 

Andrew did take the day off, but I didn't get home until after 7 again. I did stop and buy his favorite doughnuts from Walmart. I bought two boxes: one of his favorites and then one for the rest of us. He asked if he could have a second (or third?) from his box and I told him those were his, to do what he wants with him.

His exclamation of surprise reminded me of a little kid at Christmas. His grin was so reminiscent of yours.

He's an awesome young man, and he's been such a great brother for you. He would totally tease you and you would go right back at him. The last picture we have of him holding you in the hospital, so raw, so painful, so full of love was his Facebook profile pic for a long time. 

He is so proud of you.

We are so proud of both of you. 

I'm sure you're very proud of him.

So since Tuesday was kinda crazy, we'll celebrate him today, the other half of our A Team. 

He wears your initial around his neck daily. I suspect that most people think it's for him. It's not. It's for you.

Recently a mom asked how to tell her children that the baby she is carrying won't be here very long. I remember telling your older siblings about you. Each had a different reaction. Andrew was not quite seven at the time. His birthday was just over two weeks before yours. Somehow it didn't make sense in his little six-year-old brain. He would just go on with life, and then usually at least a couple times a week he would pause and look at me and ask, "Why can't babies like ours live very long?" And honestly, most of the time I would just reply, "I don't know." 

But he knew he loved you, he wanted another little brother, and to him, that's pretty much who you were. 

We took you to the Alpine Days parade that year and were hoping to find close parking, mostly to be able to escape if you struggled. It was so hot, and you were so tiny and fragile. So Daddy asked a policeman if there was handicapped parking somewhere, and from the back of the car, Andrew piped up, "Who is handicapped?" 

He didn't see you that way. You were just his brother. 

You have shaped us into the people we are today, much better than we were before.

We love you so much. Thank you for being part of our family.

Miss you.

Love,
Mama

"No individual can a win a game by himself."

- Pele