Joseph's Birthday

Dear Aaron,

It's Joseph's birthday today. The last of the July birthdays, the last of the boys' first birthdays without you.

There were five of us, and yours was also supposed to be in July. That would have made number six in our family for a single month. David and Jonathan were in March, Andrew in May. We just have your sisters' birthdays left. Deborah in October and Mary two days before you left us.

Birthdays seem weird to me this year. Will they always? I don't know. Maybe the numbness wears off. Maybe the sadness tinged with joy reverses and becomes joy tinged with sadness. Maybe I have no idea how it all works out over time.

I just know I miss you.

I was asked to gather some pictures of you today from the course of your lifetime. They did make me smile, but I don't know if the smile reached my heart. 

Joseph is in southern Utah and provides ground clearance support for wildfires. There's plenty of those burning. I pray you watch over him, I don't know what I would do if I lost another child. 

Oh Aaron, I miss you. We almost lost you the week before your 13th birthday, but then you stayed for six more months. I wish it could have been six more years, or longer. 

The weather is cooling a bit. Oh, I expect the temps will rise again before fall comes, but the sun rises later and sets earlier. It was much more comfortable for longer this morning and earlier this evening. The cold, dark days of winter are coming, and with it your angelversary. 

The leaves will turn colors and fall from the trees. The hummingbirds I watch each evening will migrate south. And snow will come and blanket your grave again. 

I almost feel like I'm on the outside of life looking in. I'm starting to see the patterns but without you they seem empty. 

I love you, little man. Be close, to all of us.

Love,
Mama

"Those we love and lose are always connected by heartstrings into infinity.” 

— Terri Guillemets 

I Am Weary

Dear Aaron,

I'm weary.

This cannot be fixed by sleeping, by resting. I don't know what "fixes" it. But it is an exhaustion I feel deep in my bones, in the very marrow of my bones.

I miss you.

I go to work, I think I'm effective there, but when I get home it's like I'm back to slogging through the mud again. 

I mean, this is hard! I buried you this year (literally, on January 2nd). My parents aren't doing well and there's the whole concern there. 

And in a couple weeks, it will just be Daddy and me. It hasn't been that way for almost 33 years. I remember when the big kids were little wondering what it would be like to have an empty nest. Some days it looked really enticing. But then you came along and that whole "this could be good" feeling disappeared faster than the dew in the hot morning sun. 

I mean, I knew the day would come, but I figured it would be after Michael had left and come back from his mission. I didn't think it would happen when he left the house. I figured you'd still be here. 

This morning, "You Raise Me Up" was on my playlist as I drove to work. Aaron, you did lift me, and you still do. And so do your siblings, and my grandchildren, and your Daddy. 

You give me strength to carry on, to move forward, to keep trying. The mountains surround me, protecting and comforting. 

And sometimes, I'm still swamped and feel like I'm drowning. 

I guess that's okay, that duality of being held and strengthened, and still feeling overwhelmed and so broken.

So weary.

I love you, kiddo.

I miss you.

But I'll keep going.

Love,
Mama

“It is the capacity to feel consuming grief and pain and despair that also allows me to embrace love and joy and beauty with my whole heart. I must let it all in.”

— Anna White

Michael's Farewell

Dear Aaron,

It's been a good weekend, and a rough one too.

Your cousin, Stephen, got married yesterday with all the wonderful celebrations that go along with that.

And today Michael spoke in church and we had family and friends over after.

Really good things! 

He spoke about friendship, and about you. You two were great friends. He talked about the way you made him feel, how you helped him process and focus on joy. He mentioned feeling you at his last track meet, going to see you after to tell you how it went, and sensing that you already knew because you let him know you had been right there with him. On a misguided attempt to climb the mountain close by, when he wasn't sure how to get back down, everywhere he looked he saw butterflies and felt you near. You're still the best of friends, just not currently in the same dimension. 

And I hope he feels you on his mission as he helps and teaches others about Christ and love and families. 

Your hummingbirds come frequently to their feeder. They zip in, eat, sometimes perch on the bar, and occasionally fight off one another. And every once in a while, one comes over right in front of me, looks directly at me, hovering just a couple feet away. This morning it happened, and I wondered if it was a sign that you are near. 

The hard part about the weekend is that it started with a migraine. It's probably been 10-12 years since I had an aura. Those start with a tiny pixelated area; usually I don't even realize it at first, just that my vision is "weird." But when I look closer, I notice the pixels instead of clear vision, and it grows. That's my warning that I've got about 45 minutes before I'm down and out for the count. I guess in some ways it's helpful because I have warning before the pain hits. On the other hand, it usually signals a pretty bad one. 

My brain is still, more than 48 hours later, pretty fuzzy. It's bad enough that if I hadn't just been cleared with a bunch of heart tests, I might go in. But given that they all came back perfectly, I think it's a matter of working through the garbage my brain is currently throwing at me.

So I'll go to bed early. And hopefully I'll sleep well.

And maybe, just maybe you'll come see me while I sleep. 

Please...

Love, 
Mama  

The language of friendship is not words but meanings.

~Henry David Thoreau

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